tag:blogger.com,1999:blog-80318896418310630612024-03-13T03:47:05.730+00:00It's a Shit Businessmy life with Multiple Sclerosis - there will be jokes, toostevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.comBlogger320125tag:blogger.com,1999:blog-8031889641831063061.post-75443741864349662362023-03-29T10:12:00.002+01:002023-03-29T10:12:47.588+01:00i feel (too?) good<p>Later today I go for a short appointment with the MS Nurses. Not a full MOT as far as I know, just a catch-up. </p><p>Obviously this is the first face-to-face meeting with them since I was ill earlier this year. So it'll be interesting at least.</p><p>Weirdly, last night I finished the book I started reading towards the end of my stay at my parents house. It's a book about Kraftwerk that Mrs D got me for Christmas. It isn't particularly long - I just couldn't focus on reading for the first month, and there are always newspapers and magazines vying for my limited attention.</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKFirLFl-7M6vkr-t5q27ppj0i6RJl3M7I1Hrj1IabaavQUJT5suGBhDshUeZGhHK8ha2R1UxSxtB3oR2ZQf8Tu3VE6ieCllICgICx5ksFrs-loBLwxoTSZN7zcNjC4DgYWN_h3kYRakwu5wvz56w5y_BR26xTHfhDRlKGTaCQ3HIewjHwUGqxqp-etg/s3129/Untitled-squashed.jpg" style="margin-left: auto; margin-right: auto;"><img alt="Image shows a book: Kraftwerk by Uwe Schütte" border="0" data-original-height="3129" data-original-width="3014" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKFirLFl-7M6vkr-t5q27ppj0i6RJl3M7I1Hrj1IabaavQUJT5suGBhDshUeZGhHK8ha2R1UxSxtB3oR2ZQf8Tu3VE6ieCllICgICx5ksFrs-loBLwxoTSZN7zcNjC4DgYWN_h3kYRakwu5wvz56w5y_BR26xTHfhDRlKGTaCQ3HIewjHwUGqxqp-etg/w308-h320/Untitled-squashed.jpg" title="Kraftwerk by Uwe Schütte" width="308" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i>Kraftwerk by Uwe Schütte</i></td></tr></tbody></table><p></p><p>Since I last wrote anything here I've been getting on okay. But I have been guilty of maybe feeling <b>too good</b>. For example, I'll often walk the length of our house without thinking. And then I'll realise that I don't have my walker or my sticks, and I'm now stranded at the wrong end of the house and I have no idea how I'm going to get back.<br /></p><p>I've been out with friends and family a few times, and I've been playing guitar and working. On that, the fact that all of my podcasting clients were totally understanding is undoubtedly one of the best things from this whole situation. I'm so glad I've found a new and better way for me to work. </p><p>I'm increasingly aware of how much my illness affected everyone around me. I can understand that they tried to keep their own struggles from me while I was recovering. But just in conversations with Mrs D, our friends, my parents, they'll say something that makes me stop. </p><p>For example, Mrs and Little Ms D frequently shared a bed because neither could sleep. The way our friends rallied around them both and made sure they weren't alone. It's important to remember that I'm not going through this by myself. And I know that. </p><p>But perhaps more importantly, I'm not the only one who was diagnosed with MS all those years ago. My friends and family were too, because it affects them everyday. Not to make me feel any more guilt than I feel already! Believe me there's enough of that. </p><p>But I'm maybe more aware than ever before about the love that surrounds me, sometimes from unexpected places. I'm very grateful and blessed. </p><p>-- <br /></p><p>The emotional nature of this post might have something to do with the music I'm currently listening to. While I was recovering, the only music I had with me was what was on my phone. Which consisted of our Christmas playlist and the one belonging to my daughter (which has a lot of very cool music on it, I have to say.) </p><p>At one point I downloaded the Bandcamp app so I was able to listen to the albums I'd bought through the site. And I bought a new album. </p><p><a href="https://junihabel.bandcamp.com/album/carvings" target="_blank">"Carvings" by Juni Habel</a> is a collection of spectral folk <b>(new genre alert!)</b> from a Norwegian songwriter <b>(two ticks for Steve's tick list)</b> that was recorded in various rooms in her grandmother's house <b>(recording backstory - BIG tick!)</b></p><p>It's utterly lovely - listen to it below.</p><p><iframe seamless="" src="https://bandcamp.com/EmbeddedPlayer/album=3720036756/size=large/bgcol=ffffff/linkcol=0687f5/artwork=small/transparent=true/" style="border: 0; height: 406px; width: 400px;"><a href="https://junihabel.bandcamp.com/album/carvings">Carvings by Juni Habel</a></iframe></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-69621225591726905012023-02-02T14:51:00.000+00:002023-02-02T14:51:13.562+00:00i believe in... miracles?<p>Over the past couple of weeks I've made a recovery that is nothing short of miraculous. Not 100% back to where I was but maybe 70%. </p><p>Four weeks ago I was completely immobile. It took both my parents to get me on the toilet, and in order to avoid accidents I was going to the toilet every 60/90 minutes. Despite that I was wetting the bed up to three times a night. </p><p>After I stopped taking Tamiflu, I gradually got more strength back (I say gradually because that's how it felt to me but really, I was improving in the first week). Using a rollator I was able to stand up straight, straighter than I do when I use my walking sticks, and walk around the house. One night I woke up needing the toilet and I was able to get there (on time!) on my own. That was <b>big</b>. </p><p>After a couple of nights of this I've since been sleeping through with no issues - <b>Intermittent Self Catheterisation FTW</b>. </p><p>Washing during the worst of my days was a scooch of deodorant and a wet wipe or a quick dab of soap and water in my parent's kitchen. My mum washed my hair in the same way. </p><p>Now I'm able to get upstairs and into the shower, washing and drying myself independently. </p><p><b>FULL DISCLOSURE: </b>all of these little victories leave me utterly exhausted. But still, it's really amazing how it has happened. </p><p>Last week I went home for the day for an assessment with a community nurse. She asked me loads of questions, had a good walk around the house and watched me walking with the rollator (excellent) and my sticks (better than before, thanks to the rollator, but so much more tiring.) </p><p>Earlier today I got a call from the medical equipment company and everything we wanted will be delivered and installed next week. </p><p><b>US readers:</b> did I mention this will be free of charge? <b>GOD SAVE THE NHS</b>. </p><p>The main thing is, next week I should be back living at home - for the first time since the end of December.</p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com3tag:blogger.com,1999:blog-8031889641831063061.post-3933715127929681382023-01-26T15:24:00.001+00:002023-02-02T14:54:40.138+00:00another reason to love ocrevus<p>One thing I forgot to mention from when I spoke to the MS Nurse recently. She effectively said that <b>Ocrevus was the reason why I'd got all of these infections</b>. </p><p>I've written in the past about how effective it is as an immunosuppressant, stamping down on my immune response for up to six months following each infusion. Previously this has caused me to delay having Covid vaccines and my annual flu jab, simply because Ocrevus is so good at its job. There's no point in having a vaccine when your body is unable to provide an immune response. </p><p>But does this also mean that in the future I'm going to be leaving myself open to every single virus that's going around? At a time when years of social distancing means that nobody has built up any immunity? </p><p>I can't help feeling - yet again - that I wish I'd not had to move to Ocrevus. It's almost like the drug exists to keep me weak and isolated.
Previously when I was on Tysabri I was actually pretty healthy. I never really caught anything that was doing the rounds. Plus it was easier to fit vaccines around my infusions. </p><p>Now every time I have an infusion I need to socially distance for a month, according to a note I was given in October (at the end of my first full infusion!).<br /></p><p>But really, what are my options? I can't go back to Tysabri because of my rising JC Virus count. And as far as I can tell, Ocrevus is my last option as far as medication is concerned. </p><p>I've heard that changing to a medication with lower efficacy has been shown to increase disability. So is Ocrevus really the last horse in town? </p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-6362444364224676372023-01-24T17:50:00.000+00:002023-02-02T14:55:06.132+00:00an overdue update<p>First things first. Today, just over a week after I finished my course of Tamiflu, I <b>actually walked upstairs for the first time since the last week of December.</b></p><p>Perhaps even more importantly, I also made it downstairs safely.</p><p>When I think about where I was a week ago, it's actually mind-blowing. <br /></p>Tamiflu is an incredibly powerful drug. And the ten day course really knocked me about.
<p>But the most upsetting side effect of the flu and Tamiflu was the fact that I effectively lost control of my bladder.</p><p>Obviously I was keeping my fluids up and was self-catheterising as well as I could. But even with that I still had about a week where I was waking up two to three times a night having soakedthe bed. And this was even with the use of some pretty heavy-duty incontinence pants/pads - sometimes more than one item at the same time. </p><p>A friend of the family - who is a community nurse - said that my body was solely focused on fighting the flu. So all of my usual MS symptoms were basically allowed to run unchecked, and in my case that included bladder weakness. </p><p>Now I know that people with MS deal with this and more all the time. But as a person who has spent many years working to gain control over his bladder it was a real kick in the teeth. That old MS issue of your body letting you down again. </p><p>For the last few nights, I've been able to get out of bed (by myself, using a rollator) to get to the toilet in time. And for a couple of nights, I've even slept through! Imagine.<br /></p><h3 style="text-align: left;">What's the point of all this oversharing? </h3><p>When I spoke to the MS nurse she said that there are a lot of people with MS who are catching the flu. So if you are dealing with this and your body is concentrating on fighting the flu, you may - like me - go through a period when your MS symptoms start going crazy. As such, the chances are that these symptoms will start to calm down as soon as the flu - and Tamiflu - are out of your system.</p><p>I am by no means out of the woods. But I'm walking more, with the aid of a rollator, and I'm doing more for myself.</p><p>Having "conquered" the stairs (HA!), we're looking at things that will make it easier for me to move around our home. So like we did after my last relapse, we're getting an Occupational Therapist in to suggest adaptations to make things easier.</p><p>So things are going in the right direction.</p><p>But still. Baby steps. <br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-5559561498867458832023-01-10T19:21:00.001+00:002023-01-10T19:21:50.787+00:00worse than a relapseOk. It'd probably be wise to start getting some of this down while it's still relatively fresh.<div><br /></div><div>Christmas Day / Boxing Day were lovely. But immediately afterwards I started getting those old familiar feelings, this time with an irritating hacking cough.
<br /><br /></div><div>To give Mrs.D and Little Ms.D a break it was decided that I'd move back in with my parents - primarily because their shower and bathroom are more accessible.
<br /><br /></div><div><b>SPOILER ALERT:</b> 12-ish days later I still haven't used the shower, although I have washed.
<br /><br /></div><div><h3 style="text-align: left;">Kindness of strangers
</h3>As my mobility worsened, a seemingly endless stream of people - family members, my folks' neighbours and their relatives, old friends, district nurses - busied around the house. Moving furniture, bringing in new equipment, and eventually moving me from an upstairs room to my parent's dining room. Literally picking me up on a chair, and carrying me slowly downstairs.</div><div><br /></div><div>I can't thank these people enough for the help they provided.</div><div><br /></div><div>Eventually, I spoke to an MS Nurse who said that what I was going through was likely to be caused by a chest infection - that cough hadn't gone anywhere, either.</div><div>
<br />A course of antibiotics was prescribed and that was that.</div><div>
<br />Over the next week there were many challenges - getting to the toilet, moving around anywhere, the fact that any type of food both tasted like shit AND felt completely bizarre in my mouth. There were small signs of improvement, but overall I worsened.</div><div><br /></div><div>So. At the end of that week, I called the MS Nurse team again.
<br /><br /></div><div>The one I got this time has already appeared on this blog. She is lovely, a bit bats, but passionate about helping people.</div><div><br /></div><div>When I told her my story she was fuming. Why did they give me such a weak antibiotic? That's not </div><div>going to do anything. Get back onto your GP and get some proper antibiotics. (As an aside, I have temporarily transferred my medical care to my parent's surgery. This helped speed up a lot of things.)</div><div><br /></div><div>In order to get more medication I would need to be examined - note that this is the first time I've been seen to get a diagnosis of what's actually happening.</div><div><br /></div><div><h3 style="text-align: left;">A new diagnosis
</h3>I got a home visit on Friday evening and relayed my conversation. The visiting doctor said that the antibiotics I'd been prescribed were some of the strongest available. Also, that if I'd been given any more I'd have been taken straight into hospital and if I'd been given steroids (to combat a relapse, for example) I'd have needed to be placed on isolation.</div><div><br /></div><div>After observing a temperature of 39.8 C (which for our American friends is something like 103.6 F), he diagnosed me with a particularly nasty strain of influenza - I was the third person he'd diagnosed that evening, but the first one he hadn't ordered into hospital.
<br /><br /></div><div>So I'm currently in the grips of a very strong strain of flu. I feel incredibly lucky that I have not been placed into a hospital. Sleep is very hard to come by.</div><div><br /></div><div>Today is day four of my course of Tamiflu (remember that? So retro!). It is very powerful but feels to be working. There are very small but noticeable improvements appearing every day. I'm so disoriented.</div><div><br /></div><div>According to the doctor I saw, over the 10 days of Tamiflu I should expect to see a lot of improvements, followed by a long slow recovery of around 4-6 months. This is all very much worst-case scenario.</div><div><br /></div><div><h3 style="text-align: left;">So at least it's not a relapse, right?
</h3></div><div>Unfortunately things are never that simple. Get diagnosed with a relapse? Ride the insomnia / metallic taste charabang back to an easy recovery.</div><div><br /></div><div>With this flu I'm still living all the greatest hits of an MS exacerbation with added psychosis, hallucinations, weakness. And all without the possibility of steroids to move it on.</div>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-55456737025575663052022-12-23T11:17:00.001+00:002022-12-23T11:17:54.192+00:00another pseudo relapse<p>Yes, some actual MS-related content!</p><p>I think that the pseudo relapse might be one of the cruellest tricks that MS can play on us. A mini exacerbation of all your favourite MS symptoms that lasts for 24 hours.</p><p><b>But what a 24 hours!</b></p><p>There are a lot of colds going 'round at the moment and obviously, I'm not immune. A sleepless night due to coughing and spluttering meant that the following night I woke up feeling like I had locked-in syndrome. Just totally unable to move anything - terrifying.</p><p>The following day I was basically immobile. Luckily I'd completed my work for the year but it was scary. Like, I <i>knew</i> it was probably a 24-hour thing, but I didn't <b>know</b> it was a 24-hour thing.</p><p>And that's what's so difficult - you find yourself hoping it isn't a full-blown relapse but you know damn well there's nothing you can do to prevent it either way. </p><p>Actually, I think the worst thing might be that we put those closest to us through all of this as well.</p><p>Because today I woke up feeling a little sub-par but I was able to have a shower and go downstairs on my own.</p><p>I'm very thankful, obviously. But God, how irritating!<br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-33741330486630104922022-12-21T12:33:00.000+00:002022-12-21T12:33:34.054+00:002022 earworm advent calendar - days 13-21<p>Well, this isn't going as well as one would hope.</p><p>To be honest, we've been struck down as a family by illness in the last week, and I've been working desperately to to clear my plate. </p><p>And now that my plate is clear I have hit a wall. Cue one night of insomnia and now I feel like utter crap.</p><p>Here are the sporadic notes from the last week of earworms. </p><p> </p><h3 style="text-align: left;">Day 13-15?</h3><p><b><a href="https://youtu.be/JRfuAukYTKg" target="_blank">David Guetta feat Sia - "Titanium"</a> / <a href="https://youtu.be/w2Ww_O3ceKU" target="_blank">Pavement - "Harness Your Hopes</a>" / <a href="https://youtu.be/te4K8YIKcMQ" target="_blank">Roy Orbison - "Oh, Pretty Woman"</a></b></p><p>"Titanium" is a song that Little Ms. D is learning how to play in her guitar lessons. Pleasant enough but a classic "full of sound and fury, signifying nothing"-type song.</p><p>I've written about my (initially reluctant) love for Pavement <a href="https://itsashitbusiness.blogspot.com/2020/06/remembering-live-music-4-missed-and.html" target="_blank">before</a>. And, even though they might be in my top 3 bands of all time, I resisted the lure of this track for ages.</p><p>Why?</p><p>Because this has become the band's most played song on Spotify. Not because it's particularly good or innovative. But because it fits the algorithm for a particular type of American college guitar pop. So when people are playing something of that ouvre, this is the song that Spotify spits out.</p><p>One of my nephews first brought it to my attention as their favourite Pavement songs a couple of years ago. And now Little Ms. D as discovered it through them.</p><p>It's a good song. It doesn't rock my world but it's nice to sing along to in the car.</p><p>"Oh, Pretty Woman" popped into my head when I was making a sandwich. The filling was Vegan "Chicken".</p><p>Make our own version and be plagued by images of Vegan Chicken walking down the street.</p><p> </p><h3 style="text-align: left;">Day ?</h3><p><b>Vampire Weekend - "Holiday"</b></p><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/vraoiVCDdaM" title="YouTube video player" width="560"></iframe><p>Another of my daughter's current favourites. From their seldom-played second album, "Contra".</p><p>It's a good song.</p><p>Are you picking up that our daughter controls the music in the car? One of her current obsessions is the 'Hatful Of Hollow' version of The Smiths' "Still Ill".</p><p>One of my all-time favourites, but I wish she wouldn't kill it with repeat plays. </p><p>Yes, we indulge her. But she is awesome.</p><p> </p><h3 style="text-align: left;">Day ?</h3><p><b>Mary Margaret O'Hara - "When You Know Why You're Happy"</b></p><p><b> </b><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/ocU8QOXypHs" title="YouTube video player" width="560"></iframe></p><p>The only 'proper' album by Mary Margaret O'Hara - 1988s "Miss America" - is one of the best albums ever made. <b>FACT.</b></p><p>Well, it's one of my favourites, anyway.</p><p>Mary Margaret is the sister of Catherine O'Hara - y'know, the awesome actress from Beetlejuice, numerous Christopher Guest films, and who played the incredible Moira from Schitt's Creek that you watched during the first lockdown.</p><p>This is a frequent earworm but it was perhaps inspired here by the fact that the opening bass line has a slight whiff of <a href="https://youtu.be/_V2sBURgUBI" target="_blank">Seinfeld</a>, which we've been rewatching recently.</p><p><i>"You move much better than you know, not just some jerky to-and-fro"</i></p><p><i> </i></p><h3 style="text-align: left;">Day 21 - I know it was because it was this morning!</h3><p>FULL DISCLOSURE: some of these might have been playing in my insomniac head.</p><p><b><a href="https://youtu.be/1mxEoA3G9Wg" target="_blank">Weezer - "Across The Sea"</a> / <a href="https://youtu.be/f37lC0CSXlQ" target="_blank">The Smiths - "The Headmaster Ritual"</a> / <a href="https://youtu.be/-QLSwGvotas" target="_blank">Johnny Cash - "A Thing Called Love"</a></b></p><p>I'm trying to keep Weezer's <b>icky</b> second album from my daughter. Let's dissect:</p><ol style="text-align: left;"><li>Oft-referenced obsession with Japanese and half-Japanese female fans (the one in this song is 18)</li><li>The album is called "Pinkerton" - Pinkerton is the name of the US naval officer who marries 15-year-old Cio-Cio-San in Madama Butterfly. After their marriage he returns to America and Cio-Cio-San waits for his return, having had his child. When Pinkerton eventually comes back with his American wife, it is only because they have decided to raise the child in the US. Pinkerton refuses to see Cio-Cio-San, and she kills herself.</li></ol><p>So it make me a little uncomfortable. From <a href="https://en.wikipedia.org/wiki/Pinkerton_(album)" target="_blank">Wikipedia</a>:</p><p></p><blockquote><i>Pinkerton</i> is named after the character BF Pinkerton from Madama Butterfly, who marries and then abandons a Japanese woman named Butterfly. Calling him an "asshole American sailor similar to a touring rock star", [Weezer songwriter Rivers] Cuomo felt the character was "the perfect symbol for the part of myself that I am trying to come to terms with on this album".</blockquote><p></p><p>Am I being too hard on it?</p><p><b>"The Headmaster Ritual"</b> is a Smiths song that I haven't managed to play for my daughter. It's obviously a belter.</p><p>Oh yes, FYI Little Miss D. is well aware of the fact that Morrissey is now a loser. She's cool with cognitive dissonance.</p><p>And absolutely no idea where that <b>Johnny Cash</b> song came from. The mind is a terrible thing to taste, no?</p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-57667534603218533372022-12-12T15:35:00.000+00:002022-12-12T15:35:12.596+00:002022 earworm advent calendar - days 2-12<p>Yeah, I know, I know. This is harder than it looks y'know...</p><h3 style="text-align: left;">Day 2</h3><div style="text-align: left;"><b>ABBA - "Gimme! Gimme! Gimme! (a man after midnight)"</b></div><div style="text-align: left;"> </div><div style="text-align: left;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/XEjLoHdbVeE" title="YouTube video player" width="560"></iframe><br /></div><p></p><p></p><p>Not my favourite track by the evil Swedish pop geniuses. However, it is the basis of a horribly weak joke that I made up and sent in to the <a href="https://www.adam-buxton.co.uk/" target="_blank">Adam Buxton</a> podcast for inclusion on the annual Adam and Joe Christmas Podcast 2022. Fingers crossed!</p><p><br /></p><h3 style="text-align: left;">Day 3</h3><p><b>Hideous mental mash-up of <a href="https://youtu.be/HL_WvOly7mY" target="_blank">Weezer's "Beverly Hills"</a> and <a href="https://youtu.be/FC3y9llDXuM" target="_blank">"Teenage Dirtbag" by Wheatus</a></b></p><p>This is particularly heinous because they're effectively the same song.</p><p>Weezer's first "Blue" album was the soundtrack to my final year at University. Played it every morning without fail. Little Ms. D has recently got into it, but I advised her not to go any further into their back catalogue.</p><p>A friend made her a playlist of what he considers to be their better post-blue moments. When Little Ms. D heard this she christened it "Disney Rock." </p><p>The apple doesn't fall too far from the tree, does it?</p><p>"Teenage Dirtbag" is just pure dreck.</p><p><br /></p><h3 style="text-align: left;">Day 4</h3><p>Radio silence</p><p> </p><h3 style="text-align: left;">Day 5</h3><div style="text-align: left;"><b>A MEGAMIX of <a href="https://youtu.be/TZhY_xXjWw0" target="_blank">"Christmas Everyday" by Smokey Robinson & The Miracles</a>, <a href="https://youtu.be/vw5i7TPkYfI" target="_blank">"Jimmy James" by Beastie Boys</a>, and <a href="https://youtu.be/Mw1D9c56n3Q" target="_blank">"You're the One For Me" by Jonathan Richman & The Modern Lovers</a></b></div><div style="text-align: left;"><p style="text-align: left;">The first actual Christmas song of the season. This one by Smokey Robinson and friends has been getting played a lot in our house.</p><p style="text-align: left;">The Beastie Boys are always in heavy-rotation - the album this is from, "Check Your Head", is an all-time Top-10er. RIP MCA.</p><p style="text-align: left;">Look I'm not going to band on [too much] about how much I love Jonathan Richman. Again.</p><p style="text-align: left;">The album this is from - "Jonathan Sings" is a really odd song, as it features really professional and well-recorded musicianship. I got this primarily for "Not Yet Three, to soundtrack a mushy video compilation of Little Ms. D at a time when she was not yet three. </p><p style="text-align: left;"><br /></p><h3 style="text-align: left;">Day 6</h3><p style="text-align: left;"><b>The Aislers Set - "Cold Christmas"</b></p><p style="text-align: left;">A re-entry, from the last time I did this, when it appeared on Day 18.</p><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/blLHT082R2w" title="YouTube video player" width="560"></iframe><p style="text-align: left;">I still know nothing about this band but it's a belter and livens up any Christmas playlist.<b></b></p><p style="text-align: left;"> </p><h3 style="text-align: left;">Day 7</h3><p style="text-align: left;"><b>"Rockin' Around the Christmas Tree" by Brenda Lee into "O Paul" by Palace Brothers</b></p><p style="text-align: left;"><br /><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/2nlZN570YFM" title="YouTube video player" width="560"></iframe></p></div><p><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/Ug0BwesA_CE" title="YouTube video player" width="560"></iframe> </p><p>Two Christmas Country poppets. Brenda Lee has obviously been played in our house but that first Palace Brothers is as unseasonal as they come. No idea where that came from but we LOVED that album when it first came out.</p><p>PS nobody mention the Mel (Smith) & Kim (Wilde) version of "Rockin' Around the Christmas Tree", ok?</p><p><br /></p><h3 style="text-align: left;">Day 8</h3><p><b>"Ain't No Mountain High Enough" - Marvin Gaye & Tammi Terrell</b></p><p>No words required. Just immaculate.</p><p><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/IC5PL0XImjw" title="YouTube video player" width="560"></iframe></p><p><br /></p><h3 style="text-align: left;">Day 9</h3><p><b>Richard Dawson - "The Hermit"</b></p><p>At 41 minutes long, ordinarily this song alone would count as the best album of the year.</p><p>Thankfully the rest of "The Ruby Cord" is also brilliant. </p><p>My wife and daughter refuse to let me play it so here it is for you.</p><p><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/iXfDNVcUA90" title="YouTube video player" width="560"></iframe></p><p><br /></p><h3 style="text-align: left;">Day 10</h3><p><a href="https://youtu.be/hRK7PVJFbS8" target="_blank"><b>Kendrick Lamar - "King Kunta"</b></a></p><p>From the best album of the 21st Century, "To Pimp A Butterfly". Not my favourite track so I've got no idea why the phrase that I heard upon waking up was "You goat-mouthed mammy f**ker".</p><p><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/hRK7PVJFbS8" title="YouTube video player" width="560"></iframe></p><p><br /></p><h3 style="text-align: left;">Day 11</h3><p><b>Deerhoof - "Witchery Glamour Spell"</b></p><p>I hadn't slept that well so <b>- even though I love Deerhoof more than anything - </b>this is further proof that my brain is an arsehole.</p><p><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/MLEQlnSFJE0" title="YouTube video player" width="560"></iframe></p><p><br /></p><h3 style="text-align: left;">Day 12</h3><p>Radio silence so here is what is officially my current favourite Christmas song.</p><p><b>Connie Francis – "I'm Gonna Be Warm This Winter" </b> <br /></p><p><iframe width="560" height="315" src="https://www.youtube.com/embed/EPDzohv_VVo" title="YouTube video player" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen></iframe><br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-91013914616242767802022-12-01T10:02:00.000+00:002022-12-01T10:02:16.283+00:002022 earworm advent calendar - day 1<p>For reasons best known to myself (forcing myself to write something, <b>anything</b>), I've decided to do another earworm advent calendar this year. </p><h3 style="text-align: left;">The rules</h3><p>Every morning I'll open up a door in my advent calendar (wake up) and look at the picture (make a note of the song that is playing in my head.) </p><p>This one's fairly obvious.</p><p>There've been a number of rock deaths this year but not really of the sort of deaths that send me sobbing to my bed (David's <a href="https://itsashitbusiness.blogspot.com/2016/01/in-brief.html" target="_blank">Bowie</a> and <a href="https://itsashitbusiness.blogspot.com/2019/08/nights-that-wont-happen.html" target="_blank">Berman</a>, I'm looking at you.)</p><p>Case in point: when I heard about <b>Wilko Johnson</b>'s death, it was definitely more of a "aww, that's a shame" kind of thing. Sad, obviously, but I'm sure even he'd agree that his last years were nothing short of miraculous. </p><p>After being diagosed with terminal pancreatic cancer in 2012, he went on a farewell tour and released what was assumed to be his final album. Two years later, an operation to remove a 3kg tumour left him cancer-free, buying him an extra ten years. Crazy. </p><p>I don't own any Dr. Feelgood albums but their amphetamine-fuelled take on early tock and R&B was clearly a huge part of what would become Punk. Part of the what was called the British 'pub rock' scene (patronising, much?), theirs was a kind-of back-to-basics reaction to the prog rock excesses of the mid-70s. </p><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/iHm7uIC84YM" title="YouTube video player" width="560"></iframe><p>There were many tributes to Wilko after his recent death, but this video shared by Steve Albini on Twitter was my favourite. </p><p>This is down to the fact that Wilko is playing lead and rhythm guitar at the same time. And he's getting such a precise percussive sound playing just with his fingers. </p><p>Also the fact that lead singer Lee Brilleaux is so obviously "chemically stimulated" that he appears to be - to paraphrase Steve Albini's tweet - chewing his teeth to dust.</p><p><b>Happy Christmas, one and all!</b></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-65258445497246739382022-10-28T12:57:00.001+01:002022-10-28T12:57:00.149+01:00the crap gap - real or fake?<p>Hold your horses! I know that for many people with MS who take disease modifying therapies, we can all feel like crap in the period immediately before our next dose. A reminder:<br /></p><p style="margin-left: 40px; text-align: left;"><b>The Crap Gap: </b>the period immediately in the lead up to another round of MS medications, particularly infusions, when the patient begins to feel particularly fatigued and "ready for it." Psychosomatic according to some neurologists, it nonetheless feels particularly real to the patient. <br /></p><p>When I was injecting myself with <b>Rebif</b> three times a week, I'd always felt like crap on my in-between days. I was taking <b>Tecfidera</b> so often that I didn't have time to feel bad but going to <b>Tysabri</b> infusions every four weeks I always felt I was ready for my next dose. </p><p>The fact that this didn't alter when I changed to infusions every six weeks didn't really change my thinking. Neither did the fact that when I mentioned this to my neurologist and he told me categorically that it was all in my head. </p><p>However… </p><p>As I write this I'm currently having my first full dose of <b>Ocrevus</b>. I had my initial two half-doses in November of 2021. </p><p>So in total, it has been an <b>eleven months</b> wait.</p><p>If the crap gap was real, I'm pretty sure I would've felt dreadful yesterday. </p><p>Now the last year has been so uncertain. I've had no idea when or if I'd be getting my next dose of Ocrevus. So I could well have unwittingly programmed my body to power on through because of the uncertainty. If I didn't know when it would happen, how could I feel crap in advance? </p><p>The only problem is, I've had this date in the calendar for the past <b>five weeks</b>. </p><p>Please know that I fully understand that this is only my own personal experience. And when I've felt the crap gap in the past, I've <b>known</b> that it was real. </p><p>But looking at my various DMT timetables over the years that doesn't make sense. </p><p>I'm a firm believer in the placebo affect. And just because something isn't physically real, if it feels psychologically real then to all intents and purposes, it is real. </p><p>I just think it might be a little less terrifying for anyone newly diagnosed or just starting a DMT to hear something like, "Some people start to feel like they're a little run down immediately before they go in for treatment. But it's nothing to worry about." </p><p>As opposed to, "Oh god, I feel absolutely awful before I have my infusion." </p><p>Similarly, the second part of that statement is, "But I feel amazing as soon as I've had it." </p><p>What if before my first/second infusion I felt like crap, and then I didn't feel any better afterwards? What would that do for how I feel about my DMT and / or my future with MS? </p><p>I suppose if the idea of the pre-infusion slump followed by the post-infusion boost makes you feel better, then by all means continue to <b>do you, boo</b>. </p><p>But based on twelve years of research, <b>for me personally</b>, it doesn't exist. And I'm cool with that. <br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-11831111020166946122022-10-06T13:23:00.001+01:002022-10-06T13:24:01.582+01:00was it something i said?<p>So last night I went to the pub with my brother. It's been a while since we\ve been able to meet up - and seeing as I am now fully vaxxed up (COVID <b><u>and</u></b> Flu), this seemed like the perfect opportunity.</p><p>He came over to where I live and because I was feeling a littlebit 'leggy', I decided that I would drive - we are responsible drivers, ok? Don't drink and drive.</p><p>Anyway - another reason that I drove was because my electric scooter <b>(yes, there's a story to be told about that)</b> lives in the back of our car. Not for any reason other than it would fill our house and the chances are, when I use it, I'll probably be in the car.</p><p>So we parked up nearby, assembled the scooter, and made our way into the pub (actually not the most accesible venue but we made it work). On arriving I saw an old friend from one of my previous freelance marketing jobs, sitting at a table with two people I ddn't know.</p><p>After saying hello, he held up his beer and said that he recommended that I try it. Now I'm a bit of a wimp when it comes to beer - I like a nice, light IPA (Indian Pale Ale). What he was recommending looked black and decidedly "heavy." </p><p><b>Without thinking, I said "I'd better not, I'm driving." </b></p><p>And as soon as I said it, I regretted it.<br /></p><p>The table exploded as if I'd delivered the punchline to end all punchlines.</p><p><b>Because I was driving! But not in a car! I was driving a mobility scooter! You get it? It's funny 'cos it's true!</b><br /></p><p>One person at the table then said the classic line, "Have you got a license for that?!"</p><p>It was all I could do to stop myself telling them all to fuck right off.</p><p>Look. I know that I'm possibly a little sensitive about this. A mobility scooter is something that I've fought against for a long time. I've only been out on it locally a handful of times, so I'm building my confidence up slowly.</p><p>More to the point, I understand that people get a little awkward around mobility aids and the people using them. So if they get a chance to make a weak joke to 'lighten the mood' they're going to grab it - especially if it's gifted to them by the person using said mobility aid.</p><p><b>But people, please!</b><br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-7197250357198355092022-09-14T13:01:00.003+01:002022-09-14T13:01:50.868+01:00Ocrelizumab: The Mighty Immunosuppressor <p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVphgU4OjZB5aFJ6SwQKh2xkKW5jjWvVWuS_EXFVXNJLKgAJSGtNUiOUhpLQqb5E5Tmo1KS8Fzinyl4i9Wtn33XyMh7P7zje_VvTp6024e9t9WBZeIJvtvcHm4D8bbVHQrG8Yjx4P1rlyHPEKFaBGUJZYB0gx-j5UMSQfqVhSq8Na373gs6g3GBVD2yA/s800/ocrevus.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="433" data-original-width="800" height="216" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVphgU4OjZB5aFJ6SwQKh2xkKW5jjWvVWuS_EXFVXNJLKgAJSGtNUiOUhpLQqb5E5Tmo1KS8Fzinyl4i9Wtn33XyMh7P7zje_VvTp6024e9t9WBZeIJvtvcHm4D8bbVHQrG8Yjx4P1rlyHPEKFaBGUJZYB0gx-j5UMSQfqVhSq8Na373gs6g3GBVD2yA/w400-h216/ocrevus.png" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i>picture borrowed from <a href="https://www.gene.com/media/product-information/ocrevus">https://www.gene.com/media/product-information/ocrevus</a> - not entirely sure what it means but it looks cool<br /></i></td></tr></tbody></table></p><p>You may remember, way back before the dawn of history, when I had my initial two half-doses of <b>Ocrevus</b>. That would have been November 2021. </p><p>Ocrevus (ocrelizumab) is thought to be one of the most effective DMTs. And it's quite appealing because, rather than being a daily / thrice-weekly injection, or a twice-a-day pill, or a monthly infusion, it's delivered through an infusion every six months. </p><p>Well, as I write this, in September 2022, I'm potentially on the cusp of maybe having my first full dose. Ten months later. </p><p>Here's the science bit. </p><p>Ocrevus is an immunosuppressant. The good science behind this is MS is a disease where the immune system gets a bit confused and starts to attack itself, primarily the protective sheath (myelin) that covers the nerves in the body, as well as breaching the blood-brain barrier (which leads to scarring on the brain).</p><p>So it makes total sense to basically get the immune system to sit down, take a stress pill, and <b>calm the fcuk down</b>. </p><p>Well, it turns out that Ocrevus is really good at its job. So good in fact that I've basically not had a fully-functioning immune system all year. Here's a quote from a recent letter from my MS Nurse.<br /></p><blockquote><i><b>Ocrelizumab reduces the number of particular cells of the immune system responsible for producing antibodies. Individuals receiving ocrelizumab do not seem to produce enough antibodies in response to COVID-19 vaccination which increases their risk of infection. </b></i></blockquote>Because COVID hasn't gone away (despite what some people say), my medical team and I wanted to make sure I get my fourth dose (plus my flu jab) before I let loose the <b>Mighty Immunosuppressor</b>. <p></p><p>After three blood tests at the hospital, my immune cell count has gone from 0.4 to 4.12. So I'm now able to get my next dose of COVID vaccine, followed by my winter flu jab, and then potentially my first full infusion. </p><p><b>Maybe. </b></p><p>Why any doubt? Well before I have my COVID vaccine, I need to do an antibody test. Then on the day of my infusion, I'll do another at the hospital. And I guess that my infusion will only go ahead if my numbers are correct. </p><p>I am very glad that I have a medical team that is looking out for me.</p><p>But it's times like these that I really bloody miss my regular Tysabri infusions. <br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-23302356284479141592022-07-19T12:29:00.001+01:002022-07-19T12:30:28.653+01:00an offer to the healthy but intolerantI've had so many ideas about blogs to write over the last few months. Some frustrations, some positive experiences, some actual thoughts. <div><br /></div><div>But whenever I start to think about writing them down, the whole world turns to shit.</div><div><br /></div><div>War in Ukraine, Boris bloody Johnson, loss of female bodily autonomy, the inexorable rise of the right on a global scale - the list of historically significant events just seems like it will never stop.</div><div><br /></div><div>And now - in the week when I genuinely intended to get some writing done - the world is actually on fire. I mean, I know that the theory of <a href="https://en.wikipedia.org/wiki/Heat_death_of_the_universe" target="_blank">the heat death of the universe</a> is a thing. I just never thought I'd be living through it.</div><div><br /></div><div>And yet again, when the news sources talk about the potential loss of life, who's the last to get on the metaphorical lifeboats? Who's <a href="https://en.wikipedia.org/wiki/Redshirt_(stock_character)" target="_blank">the redshirt</a>?</div><div><br /></div><div>Yes, it's the aged and <b>those with underlying health conditions</b>.</div><div><br /></div><div>I mean, it's not as though COVID has ever gone away - over 200,000 dead in the UK, the last I checked. But also, clinging on like a stubborn piece of crap that refuses to shift from the toilet bowl, are the <b>Deniers</b> and the <b>Right-To-Normal-Lifers</b>.</div><div><br /></div><div>You know, the ones who pop up all over the place to say that, if COVID is as bad as you think (<b>200,000</b>), us people with underlying health conditions should just stay indoors, cowering, while the people of real significance are allowed to go about their lives. They have a life to live, dammit!!</div><div><br /></div><div>It's the same with the heat. Some wag has already made a crack that it's obviously the snowflakes who will melt in the summer sun. It's just summer! Go back to bed!</div><div><br /></div><div>Well. You would have to be brain dead to not be worried by the current global fronts. Yes, the weather happens. But this is insane.</div><div><br /></div><div>It reminds me of the oppressive heat when we were last <a href="https://itsashitbusiness.blogspot.com/2018/08/travelling-around-venice-by-wheelchair.html" target="_blank">on holiday in Venice</a> - as an aside, I can't imagine getting into a flying test tube of germs anytime soon. But that weather was too much, even for Italy.</div><div><br /></div><div>Now there are fires all over Europe so I think we're beyond the realm of regular summer, right?</div><div><br /></div><div>Anyway, I have an offer for the NORMAL people out there in the UK.</div><div><br /></div><div>Basically, we'll treat the country as a timeshare. One month on, one month off. Both groups will need to share Christmas, obviously, but I'd even let them have an extra winter month if that might appeal.</div><div><br /></div><div>In their months they can roam around, maskless and vaccine-free, snogging and shaking hands with gay abandon, coughing in the face of understanding and decent citizenship. We'll leave you to it, as long as all the theatres and cinemas and sporting events are available to stream (because ACCESSIBILITY).</div><div><br /></div><div>In our months, <b>you</b> can stay indoors. We'll have the choice to go out wearing our masks with pride, maintaining social distance, safe in the knowledge that we won't be called weak or pathetic and that those around us at least understand why we're being careful. </div><div><br /></div><div>What do you think?</div>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com1tag:blogger.com,1999:blog-8031889641831063061.post-11572331576101071422022-03-24T22:18:00.000+00:002022-03-24T22:18:05.932+00:00philly state of mind<p>One this day four years ago, myself and the divine Mrs D arrived in Philadelphia to attend the <a href="https://huconnexion.com/pastevents2018.html" target="_blank">HU Connexion 2018 Event</a>. That whole weekend (we flew to the USA for a <b>WEEKEND</b>) seems like it's from another planet. </p><ol style="text-align: left;"><li>We boarded an aeroplane</li><li>We went to another country</li><li>We stayed in a hotel</li><li>I spent a day and a half, in a room that was filled with over 100 people from all over the world</li><li>Not only were these people all clinically extremely vulnerable, but nobody <b>wore a mask</b><br /></li></ol><p><b>Madness!</b></p><p>I know I've spoken about <a href="https://itsashitbusiness.blogspot.com/2018/03/a-lovely-time-was-had-by-all.html" target="_blank">this</a> on <a href="https://itsashitbusiness.blogspot.com/2018/04/from-our-own-correspondent.html" target="_blank">more</a> than <a href="https://itsashitbusiness.blogspot.com/2021/03/up-up-and-away.html" target="_blank">one</a> occasion the past. In fact, I spoke a little about it on a <a href="https://patientsgettingpaid.com/podcast/podcast-editor-steve-woodward/" target="_blank">podcast that I was on recently</a>. </p><p>But talking about it on that episode, it hit me again how very important that short trip was.</p><p>We were in a pretty rough place at that time. It was just over a year since I'd lost my job. Since then I'd done a bit of short-term freelance work. And then promptly had the <a href="https://itsashitbusiness.blogspot.com/search/label/Relapse%202017" target="_blank">most physically and mentally debilitating relapse</a> of my life. </p><p>At the same point in 2017, I was going through the first of my two attempts to get PIP. I think by early 2018 I'd been turned down for the second time, so we were heading down the tribunal route. </p><p>As well as all this, I was getting no closer to finding meaningful work. And the month before the conference, Mrs D's employers decided that her job was actually a temporary contract. So that was that. </p><p>The idea of going to Philadelphia had been rumbling under the surface since the start of the year - initially I was thinking about going with my Dad. </p><p>But when we found about Mrs D's job, with everything else that was going on, we just thought <b>sod it</b>. Her last day at work was the Friday, and we flew out early Saturday morning. <br /></p><p>And the whole trip gave us a massive boost. We could actually travel on our own, with a wheelchair.</p><p>Admittedly we didn't go that far while we were in Philadelphia but still. Baby steps.</p><p>Later that year we retuned to Italy (with my wheelchair) for a great holiday. I got my PIP settlement. And I got another temporary marketing contract, which helped to keep the wolf from the door.</p><p>Obviously - and perhaps most importantly - I met Kathy from FUMS and Patients Getting Paid in Philadelphia, and through her I now have a job that I love and<b> am actually good at</b>, which I can do from home. </p><p>So yes. It was an important break for us. And because of that, Philly will always have a apecial place in our hearts.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx4vOTWgFRsGevcgAqJD_SXhpv0_8xUB9_3R9swUr0Jvxs9z4YKwXFX4uAIdvpQ7qf4apDljxejfujGJ7XNhwedSPKryIDzPrt3IqZTCoQttoEsTdZm831_3RpGSUsRiXibgBKNM0QKEX7myMqj_wmzX_GDZTzo5kmMGPCkY4jQcH6mAenUGXGVz48ug/s1956/image-4-squashed.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1304" data-original-width="1956" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx4vOTWgFRsGevcgAqJD_SXhpv0_8xUB9_3R9swUr0Jvxs9z4YKwXFX4uAIdvpQ7qf4apDljxejfujGJ7XNhwedSPKryIDzPrt3IqZTCoQttoEsTdZm831_3RpGSUsRiXibgBKNM0QKEX7myMqj_wmzX_GDZTzo5kmMGPCkY4jQcH6mAenUGXGVz48ug/w400-h266/image-4-squashed.jpg" width="400" /></a></div>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-44940260763788990022022-03-21T14:23:00.002+00:002022-04-14T13:39:46.176+01:00remembering live music no.5<p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiRp3KTjh3VBJR4Yu6S3E5J0MdLbPJ15VdYH9IDUxz8Lb82uAGOWjkisuNBWhxoopM5o4yGRRwnFBgIB9BEFBdj-U5mb-y6Id674ueMVsnh-hQaJyU_6QL1I7JgzgeRn1Xm2u7iA0OePWpbPLEaM_waITJG5Sxl7ERf5EAFLPc18jgim2bIz_SjaX47bg=s1000" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="750" data-original-width="1000" height="300" src="https://blogger.googleusercontent.com/img/a/AVvXsEiRp3KTjh3VBJR4Yu6S3E5J0MdLbPJ15VdYH9IDUxz8Lb82uAGOWjkisuNBWhxoopM5o4yGRRwnFBgIB9BEFBdj-U5mb-y6Id674ueMVsnh-hQaJyU_6QL1I7JgzgeRn1Xm2u7iA0OePWpbPLEaM_waITJG5Sxl7ERf5EAFLPc18jgim2bIz_SjaX47bg=w400-h300" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i>Nirvana, live in 1991</i><br /></td></tr></tbody></table></p><h3 style="text-align: left;">Nirvana, Shonen Knife, Captain America / Eugenius - Rock City, Nottingham, 3 December 1991</h3><p style="text-align: left;"></p><p>It's been a while since I've posted one of these. And I don't think I'll be heading out for a gig anytime soon. This memory was prompted by an earworm, which in turn was prompted by Little Ms D's current musical obsession. She loves Nevermind (she's a little too young for In Utero - "Daddy, what does 'Rape Me' mean?") and plays it whenever she can. </p><p>So yes. I am old enough to say that I saw Nirvana play live. It's the kind of thing that sometimes impresses people. But less so when I say, "They were alright."</p><p><b>An explanation.</b></p><p>I was listening to something on Radio 4 a few years ago and in a discussion about favourite music, a female panelist came up with the perfect description. I wish I could remember her name because I've been using this line ever since. </p><p>She said that Nirvana didn't change her life. They were just the end of a musical line that she'd been following through the 1980s. And that sums up how I feel about them. When you've seen Pixies and Sonic Youth, and heard Hüsker Dü, Butthole Surfers, Big Black, Killdozer, Mudhoney, etc… they weren't anything Earth shatteringly new. </p><p>Now don't get me wrong, they were a great band, with great songs and a no-doubt charismatic lead singer.</p><p>Plus it was really exciting to hear "our music" being played on daytime Radio 1. I actually remember hearing Smells Like Teen Spirit being played in Nottingham's much-missed Selectadisc record shop and being blown away by how good bit sounded. </p><p>And I'm not trying to say that I heard them first. As far as I'm concerned, that honour goes to my old friend Sally-Anne. We swapped tapes and she had all of those early Sub Pop releases and <a href="https://open.spotify.com/album/4PLQ59lpHkTO3Lk1Aba3Q5?si=2wL2cLGXSS2z53fTceId9Q" target="_blank">Dope, Guns & Fucking In The Streets</a> compilations. </p><p>So anyway I saw Nirvana. And they were pretty good. Tight and well rehearsed in the way of most American bands. But, because this was over THIRTY YEARS AGO, my memories are pretty scattered. </p><ol style="text-align: left;"><li>I went to this gig on my own. I don't know why nobody else was around or could be arsed but there you go. I bumped into someone who was more a friend of-a-friend, gave him a lift home and he eventually became the singer in my last band. Strange. </li><li>Captain America (the then-current band by Kurt Cobain's favourite musician, Eugene from The Vaselines) had changed their name to Eugenius by the time the gig happened. They didn't think that Marvel would mind. The past really is another country, yes?</li><li>Shonen Knife was very kawaii and buzzy and punk-pop-tastic. Too much sugar is bad for you. </li><li><a href="https://www.setlist.fm/setlist/nirvana/1991/rock-city-nottingham-england-43d67fe7.html" target="_blank">Setlist.FM</a> has got this gig completely wrong, I think. I'm positive that the first song they played was Aneurysm. </li><li>Kurt Cobain played a guitar solo while doing a forward roll. </li><li>Krist Novoselic spent a good deal of the gig throwing his bass into the air. </li><li>Nirvana had a dancer, who it turns out was the drummer in Derby band <a href="https://en.wikipedia.org/wiki/Bivouac_(band)" target="_blank">Bivouac</a>. </li><li>It felt like they tossed out …Teen Spirit early in the set. </li></ol><p>Weirdly in researching the date for this post (I threw away all my old gig tickets!!), I stumbled on <a href="https://youtu.be/TOMOxeXu2hE" target="_blank">this video report of the gig</a>. I've no memory whatsoever of seeing a film crew there but some of these kids look like yr archetypal gormless Nottingham Rock City types. </p><p>The interview with the band is the classic alternative scene, make-up-some-stuff-and-riff-on-it-to-confuse-the-interviewer situation. But interestingly, when asked about success, they seem to say their role is to point people to all the bands that came before them (from 4.29). </p><p>A few years ago, I went to see Bob Dylan. I was lucky and got Good Bob that night so came into work afterwards saying that I'd never been in the same room as a living legend before. A colleague said, "Ah, but you were in the same room as Kurt Cobain."</p><p>To which I replied, "Yes, but he wasn't a living legend until he'd died."</p><p>Sad but true? <br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com2tag:blogger.com,1999:blog-8031889641831063061.post-67529686536609304392022-03-16T12:26:00.001+00:002022-03-16T12:26:00.212+00:00i was looking for a jab and then i found a jab...<p>... and heaven knows I feel CRAP today.</p><p>So yesterday I finally got my third COVID vaccine. It has been a LONG ASS time coming.</p><p>As a reminder, I had my second dose in May 2011. Then a few months later I caught COVID, just about the time my Neurologist recommended that I change from Tysabri to Ocrevus. After having my first two half-doses in November, I then had to sit tight before I could get another vaccine.</p><p>Until yesterday - oh, happy day.</p><p>The vaccine centre was a lot quieter than the last time I went. Because it's all over now, right? Or at the very least, we're in a place where we're all okay with over 100 people dying unnecessarily every single day, just because some people found that wearing a mask made their face a bit hurty.</p><p>The thing that remaned was the pride that the people who were working and volunteering there still clearly felt. Plus how pissed off they are that the UK government has basically washed its hands of them.</p><p>It took a while for us all to unpick what my MS Nurse was recommending for me - the letter I had was pretty confusing about whether it was a third dose or a booster. But eventually we went for a third full dose.</p><p>It was all good but today I feel like I've been run over. Bleeurgh.</p><p>Beats the hell out of getting COVID, obviously.</p><p><b>Please donate to the <a href="https://www.dec.org.uk/">Disasters Emergency Committee</a>.</b></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-13260010440078803752022-03-15T13:04:00.000+00:002022-03-15T13:04:56.927+00:00news from elsewhere<p>The state of the world (destination: hell in a handcart) means that trying to keep up with a blog just seems a little bit... pointless.</p><p>Even if I chose to comment on *all of the stuff* (a task for which I am woefully inadequate), the shit show is changing so rapidly that, if I managed to think of anything salient to write, it would likely be out of date by the time I hit publish.</p><p>And all the whining about MS just seems so <b>petty</b> - I have a home and my family is safe and we aren't being bombed indiscriminately. </p><p>All that being said, I do have some things I want to publish. But please be aware that I know that this is all very small beans.</p><p><b>Please donate to the <a href="https://www.dec.org.uk/">Disasters Emergency Committee</a>.</b><br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-62745736801344279022022-02-02T15:16:00.000+00:002022-02-02T15:16:04.679+00:00cleaning out my closet<p>This post has been sitting on my phone for absolutely AGES. After I started writing it, time became... both elastic and static. Lots has happened but nothing has happened. More to come (hopefully?) soon...</p><p>---</p><p>Well. Because simply everyone (err… SwissLet) was asking, here's an update. </p><p>A couple of days after posting the last blog, I called the MS Trust's advice line. I thought about calling my MS nurse back but I thought I'd get yer classic second opinion, about Ocrevus and the COVID vaccine.</p><p>I thought my question was a bit too specific but the woman who I spoke to was brilliant. She knew exactly where I was coming from and also knew where my MS team was coming from. She said that they were right to be careful - which strangely made me feel a lot happier. Same result either way. </p><p>I ended up watching my grandmother's funeral over Zoom. As anyone who has had to do this will know, it's better than nothing. But up until that point I was ok about not being there. Watching it from a distance, although the right thing to do, was really upsetting. I imagine it's the same for everyone who has had to do this. There's a reason why we have funerals. And to this day, it all feels a bit like unfinished business. Which is strange, because like I said earlier, I hadn't seen her properly for a long time. </p><p>Christmas was fine. Everyone in our family understood, so they all did Lateral Flow Tests before we saw them and wore masks, at least for a little while. It was a good Christmas.</p><p>---</p><p>I mean, was that even worth the wait? <br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-11602608591346785732021-12-14T13:18:00.001+00:002021-12-14T13:18:37.221+00:00between a rock and a shit place<p>And speaking of crap gaps… This has been so long coming that I've actually had my first two half doses of Ocrevus by now. <b>NEWS FLASH: I'm not dead.</b></p><p>In fact, each time I've had an infusion, I've tried to write a post. But for one reason or another, they've remained unpublished. So what scintillating titbits have ended up on the cutting room floor?</p><ol style="text-align: left;"><li>The support acts for the headliner Ocrevus (also known as the pre-meds) are a regular case of the old push-me-pull-you. Intravenous antihistamines knock you out, and then a dose of Steroids picks you up. And obviously, mean that sleep is hard to find that evening. Doesn't really explain how I managed to forget the main side-effect of steroids up until the night of my second half-dose, however…</li><li>People can be really annoying. Yes, even people with MS. We aren't all saints, y'know.</li><li>Related to this, noise-cancelling headphones are <b>the greatest invention ever</b>.</li><li>MS nurses are still great. At the end of the second infusion, one of them came up to me and asked me how I was feeling. Then she inquired about how I was going to be getting home. Then she said, "Before you go, I have one more serious question for you…" She nodded towards the remnants of the food I'd been snacking on. <br />"I love those Nature Valley granola bars but I've never had one of the Peanut Butter ones. What are they like?"<br />I answered with the seriousness this question required. "Game-changer. Total game-changer."<br /></li></ol><p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjtDMSTJhyPNjKyulI-V2u4xwyTPmHPP0NiLmNbeSSXUm4cDeW06Hnty4o4JrAM9dOwa8raEYjfalrL6_140_BjjaIIqGabQ0yuu9KzE9aKcG7YIAS3fnppW5tivUaeuYaQjhe_xSwy22oCr9Jo06bI6LGNR6U6KetwqfVNgxMKQUKIsEd7wkHX5pND5A=s598" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="598" data-original-width="598" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEjtDMSTJhyPNjKyulI-V2u4xwyTPmHPP0NiLmNbeSSXUm4cDeW06Hnty4o4JrAM9dOwa8raEYjfalrL6_140_BjjaIIqGabQ0yuu9KzE9aKcG7YIAS3fnppW5tivUaeuYaQjhe_xSwy22oCr9Jo06bI6LGNR6U6KetwqfVNgxMKQUKIsEd7wkHX5pND5A=w320-h320" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i>I'm not being paid for including this endorsement - but I'm open to offers</i><br /></td></tr></tbody></table><br />However…</p><p>You might remember that when I was diagnosed with COVID in October, I was getting ready to have my booster jab. And actually catching the damn thing put an end to that.</p><p>All throughout the period of my two Ocrevus doses, based on conversations I'd had with my Neuro and the MS Nurses, I'd been led to believe that I would have to wait until at least the end of December before I had my booster jab. </p><p>I asked for clarification after my second dose and the nurse said that she would speak to my neuro and get back to me.</p><p>But I was totally unprepared when she called and told me that the earliest I could have my next vaccine shot was <b>the end of March</b>.</p><p>This is due to the way that Ocrevus works - it's one of yer classic Immuno-suppressors. And it's so good at it that, if I had a Covid vaccine, I wouldn't have much of an immune response to fight the infection and build up antibodies. </p><p>Unsurprisingly, when the MS Nurse told me this, I said I wished that I'd stayed on Tysabri (an Immuno-modulator, if you remember). </p><p>And all of this drama was before the <b>Omnicron</b> variant and BoJo's rapid vaccination roll-out. I've so far had three emails and at least two text messages from the NHS Covid response team inviting me to book my booster jab. It's pretty wearying, especially because we're trying to prepare for a normal Christmas, which - let's face it - it doesn't look like any of us are going to get.</p><p>So after basically shielding for all of 2020, and actually getting Covid, I'm in the same boat until the end of March 2022 at the earliest. </p><p>And if by some miracle, Christmas 2021 isn't a total write-off, I'll need to be the ghost at the feast and - to the best of my ability - avoid seeing most of my family.</p><p>Weirdly, there's a Facebook group for people on Ocrevus. And EVERYONE has been told different things about when they can get their third vaccine / booster dose.<br /></p><p>The most immediate repercussion of this is that I'm going to have to miss my grandmother's funeral next week - it's upsetting but I just can't take the risk.</p><p>I know that this sort of thing has been going on throughout the pandemic, but it doesn't make it any less of a shit business.<br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com1tag:blogger.com,1999:blog-8031889641831063061.post-25712529920711156902021-11-16T12:30:00.031+00:002021-11-16T12:30:00.176+00:00the crappiest of crap gaps<b></b><blockquote><b>The crap gap:</b> the period immediately in the lead up to another round of MS medications, particularly infusions, when the patient begins to feel particularly fatigued and "ready for it." Psychosomatic according to some neurologists, it nonetheless fells particularly real to the patient. </blockquote><div><div></div><div>Cast your mind back a few months. I spoke with my neuro about my JC Virus count. As it was rising - and because I'd been in Tysabri for four years - he advised me to change my medication. And due to the nature of these new meds he needed me to have a lumbar puncture to ensure that the JC hadn't got into my spinal column. </div><div>
<br />I think I wrote quite enough about that particular experience! </div><div><br />At the time of that initial phone call my neuro said that I'd probably be able to sneak in one more dose of Tysabri before the changeover. Cushty. </div><div><br />However I think my LP appointment came through a lot quicker than anyone was expecting. And obviously (although - FULL DISCLOSURE - I didn't put two and two together like a div) if I had one more dose of Tysabri I would need to have another LP. </div><div><br />And as mentioned previously, that ain't happening again. </div><div><br />So even though I started writing this post a long time ago, after nine and a half weeks without any DMT, tomorrow I'll be getting my first half-dose of Ocrevus. </div><div><br /></div><div>In fact, by the time this gets published, I'll be having it already.
<br /><br /></div><div>And how am I feeling?
<br /><br /></div><div>Well, apart from being completely knackered, and - oddly - really looking forward to my first dose, I feel pretty good. Apart from feeling <b>pissed off with my neuro</b>.
<br /><br /></div><div>Because, despite how I felt before every one of my Tysabri infusions. Hell, even despite how I felt before each of my Rebif injections. And despite the fact that every MSer I've spoken to about how they feel between doses has said that the crap gap is real.
<br /><br /></div><div>Even with all of that, I honestly feel ok. </div><div> </div><div>So my neuro is apparently correct about the crap gap being all in our heads.
<br /> </div><div><b>Bastard. </b><br /></div></div>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-68978664934160679252021-10-08T10:41:00.001+01:002021-10-08T10:44:59.016+01:00the one where I get covid<p><b>POP QUIZ!</b></p><p>What has two thumbs and COVID-19?</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0mXbuD6fZAiz4FeMPHwAJzNvAPEWAv_3eHMhBPa0DTsCZcZo2BO9uy5rrHoSqHrVfMoaC6BfyIy0Sj_RsncfI1O87EJRbP8kzklrSMZhqy5ZL3UGN4aT10Oa-DoxwY1SPVOVIc-sei-VU/s2048/IMG_4042%25282%2529.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0mXbuD6fZAiz4FeMPHwAJzNvAPEWAv_3eHMhBPa0DTsCZcZo2BO9uy5rrHoSqHrVfMoaC6BfyIy0Sj_RsncfI1O87EJRbP8kzklrSMZhqy5ZL3UGN4aT10Oa-DoxwY1SPVOVIc-sei-VU/s320/IMG_4042%25282%2529.JPG" width="320" /> </a></div><p></p><p><b>This guy!</b><br /></p><p>A little bit of backstory. <a href="https://itsashitbusiness.blogspot.com/2021/09/lumbar-puncture-first-experience.html" target="_blank">When we last met</a> I was feeling horribly smug about how easy (sort of) I found the lumbar puncture procedure. </p><p><b>Well. </b></p><p>Obviously this led to a SIX DAY headache. </p><p>Steve's top tip: drink as much water as possible. Yes, the nurses told me to do this. But how do you know when you've drunk enough water?</p><p>(Apart from noticing when your head stops pounding, anyway)<br /></p><p>I eventually got it right when the Divine Mrs. D bought me a water bottle that has hour markings on it. It's surprisingly easy when there's a sort of game involved.</p><p><b>Anyway. </b></p><p>All during this time it became obvious that COVID was burning through Little Ms. D's school. Before Christmas they were encouraging the wearing of masks, keeping year groups apart and staggering times of the start and end of the day. Obviously a pain for parents with more than one kid but at least it cut down on the crowds at the school gates. </p><p>However in January, everything reverted back to how it was before, including no recommendation about mask wearing. We thought it was insanity and it appears we've been proven right. </p><p>We've been getting loads of messages from the school of confirmed cases, across all the year groups. So it was clear that something wasn't going well.<br /></p><p>And at the start of last week - just when I was dealing with my post-LP headache - we found out that one of Little Ms. D's best friends had a confirmed case. At the end of the week she was going for a sleepover at my folks' house so we thought we'd give her a quick lateral flow test, which came back positive, same as the PCR test she did the following day. </p><p>Both me and Mrs. D did a Lateral Flow test that weekend - both negative - but when we did the PCR tests, although Mrs. D's was negative, mine was positive. </p><p>It is, to put it mildly, <b>a massive pain in the arse</b>. I was getting ready to get my COVID booster jab and my flu vaccine, prior to changing my MS medication. Ever since this damn thing started, we've been so bloody careful. And I <b>still</b> got caught out. </p><p>I don't want to come across like Donald Trump <b>*shivers*</b>, but I feel like I've got a bad cold. Having said that, the brain fog is strong, and the fatigue is - dare I say it? - relapse-like. But that ain't happening. </p><p>Infuriatingly, people continue to swan around without wearing masks. And you can't even blame them, can you? Not when the UK government keeps telling people that it's <b>all over</b>. </p><p>Plus it appears to be <b>really going </b>for that whole <b>herd immunity</b> thing, and is more concerned with the economy and getting back to a normal which didn't really serve the needs of the majority of people in the country.</p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-77317917739798927092021-09-23T12:48:00.004+01:002021-09-23T12:58:25.197+01:00excellent service, would recommend<p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyPS1oG3UE7eqT7yw_i6oYtJof7vRYmqMgH0ggdSwhX6CbvN_hNGHhf3_c_jGcyWJP69tzpciizkb9TH_Rxyzp-CJBJLKeviuU0bG8J97T79nMgvS5HETUNMBwLBVVgfoLpaacSAePQjTI/s390/lumbar-spinal-discs-L1-L2-L3-L4-L5.png" style="margin-left: auto; margin-right: auto;"><img alt="Image showing the sections of the lumbar spine" border="0" data-original-height="219" data-original-width="390" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyPS1oG3UE7eqT7yw_i6oYtJof7vRYmqMgH0ggdSwhX6CbvN_hNGHhf3_c_jGcyWJP69tzpciizkb9TH_Rxyzp-CJBJLKeviuU0bG8J97T79nMgvS5HETUNMBwLBVVgfoLpaacSAePQjTI/w400-h225/lumbar-spinal-discs-L1-L2-L3-L4-L5.png" title="Image showing the sections of the lumbar spine" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><i>image borrowed from <a href="http://spine-health.com" rel="nofollow" target="_blank">spine-health.com</a></i><br /></td></tr></tbody></table><br />So my first ever lumbar puncture was... fine, actually. <p></p><p>I'd been really worried about it - like two-sleepless-nights worried. And I don't think that's entirely unreasonable. There's just something undeniably weird about the idea of someone putting a needle into your spine. </p><p>What really took me by surprise when I got to the hospital was that I didn't lie down for the procedure. I just sat on the edge of a bed and leant forward onto one of those wheeled bed-tables. </p><p>After a bit of feeling around and the SHARP SCRATCH of the local anaesthetic, the actual needle which went in between L4 and L5 felt more like someone was digging a knuckle into my lower back. There was one odd moment where there was a burning sensation in (apologies, there's no other way of saying this) <b>my balls</b>. Unsurprising when they're rooting around in a cluster of nerves, I guess. </p><p>The most disturbing bit was the noise the student nurse who was observing made when she saw the fluid coming out. A bit worrying, but then I did make a point of <b>not</b> seeing the size of needle they were using. I assume it looked worse than it felt. </p><p>After coming out of the gates at a tremendous pace, things then slowed down to a dribble when filling the second and third vials. But after about 20/30 minutes it was over. </p><p>This was when the headache kicked in. Man, that was something else. The doctor explained why it had started and the reason was one of those blindingly obvious things that you feel stupid for not thinking of yourself (if you're an idiot like me). </p><p><b>As in: </b>Spinal fluid goes around the brain. If you remove fluid and the subject stands (or in my case sits) up, the fluid will flow down, leaving the brain exposed. Fixed by a big old glass of water and two paracetamol, followed by an hour lying down with observations every 15 minutes. </p><p>Which also included the collection of a freakish amount of blood. Obviously they needed to take some blood as part of my LP procedure. But the MS nurse thought that, while I was there and cannulated, it would be worth doing all of the tests required for each of the three DMTs I'm looking at. Pretty smart. And it saves me having to go back to the hospital for more tests further down the line.</p><p>So after filling TWELVE VIALS of blood, and being observed while walking, I was allowed to go home.<br /></p><p>My final thoughts? It really wasn't anywhere near as bad I thought it would be. But, y'know: <b>needle; spine; puncture</b>. </p><p>One thing. While I know that's the way a lot of people come to their initial diagnosis, I'm SO GLAD that mine didn't come through this procedure. At that point, everything was so unnerving and unknown.</p><p>My first MRI was bad enough. But I would've totally freaked out if the doctor had said, "Just to make sure we know what we're dealing with, I think we should drain off some of your spinal fluid." </p><p>Having said all that, if you're in the position of needing to have a lumbar puncture procedure, in my experience it really isn't that scary. Talk to the doctors and nurses, explain your <b>perfectly rational</b> fears, and take comfort from the fact that you're not alone.</p><p>For example, one of my MS Nurses said that the one time that she nearly fainted while training to be nurse was when she witnessed a lumbar puncture.</p><p>As I said: <b>needle; spine; puncture</b>. It's not natural, is it?<br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-47096098652000569392021-09-21T12:30:00.001+01:002021-09-21T12:33:05.045+01:00ah, mr. lumbar puncture - i've been expecting you<p>16 years after my MS diagnosis, I'm having my <b>first ever</b> lumbar puncture this week.</p><p>How have I managed to avoid one so long?</p><p>Well, my diagnosis was arrived at after looking at years of medical history - misfiring neurons wrongly labelled as trapped nerves, mostly - and eventually an MRI. </p><p>My lumbar puncture is to see the extent to which the JC virus has invaded my spine. Knowing if this is the case will enable me to make a choice about my next MS DMT. </p><p>At present this choice comes down to three options - <b>Mavenclad (cladribine)</b>, <b>Fingolimod (Gilenya)</b> or <b>Ocrevus (ocrelizumab)</b>. So two oral meds and one infusion.</p><p>Actually, if this test shows the JC virus, I'll be down to a choice of one. </p><p>The main thing that's worrying me about all of this is that eventually I'm going to <b>run out of possible treatments</b>, right? Tysabri is at the top of the tree with regards to efficacy, Ocrevus is on a level with it. So where do I go from here? </p><p>To use a computer gaming metaphor, what happens when I compete the final MS treatment level? Is there a BOSS level which defeats all comers? Or will it just be a disappointing credit sequence?</p><p>Most importantly, will this treatment ruin my favourite film of all time?</p>
<iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/N63XSUpe-0o" title="YouTube video player" width="560"></iframe>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-25687783134860343592021-09-03T13:39:00.000+01:002021-09-03T13:39:00.179+01:00help me make it through the night<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg8AxS8pw6idh150rwubRa0V4ZM-uAh_xI-k2LNJG5mhxGmCedEUqq2M2jvFplOkMHD06sklM2hit4Iq_Riaff_zN50lTpEyQhlgI7IZl_6K98rjLGeUEqEp6jF2d3RZYb-HQEyMpOaQpv/s1357/DoubleDiamond-advert.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1357" data-original-width="1000" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg8AxS8pw6idh150rwubRa0V4ZM-uAh_xI-k2LNJG5mhxGmCedEUqq2M2jvFplOkMHD06sklM2hit4Iq_Riaff_zN50lTpEyQhlgI7IZl_6K98rjLGeUEqEp6jF2d3RZYb-HQEyMpOaQpv/s320/DoubleDiamond-advert.jpg" width="236" /></a></div>Here's a thing. I've noticed that whenever I drink white wine in the evening I have to get up for a wee in the middle of the night. <p></p><p>Now. I'm well aware this might not be exactly news to some of you. But hold up.</p><p>I'm still using intermittent self-catheterisation several times a day. And even if I have a good "drain" (sorry!) before bed, I still need to get up to go to the loo after drinking white wine.</p><p>However, if I drink red wine or beer, I can and do sleep through with no problem. And I'm not totally desperate for the bog when I wake up. </p><p><b>Full disclosure: </b>I've never been a big drinker. I fact, I didn't even start drinking <i>properly </i>until my second year at University, which was when I finally got the taste for it.</p><p>Incidentally, it always seemed silly to me that there are things that you have to "work hard" at in order to like them. Like smoking, drinking whiskey and listening to Wagner. I think that the reason I finally got to like drinking alcohol was because of all the fags and weed I was smoking. Who can say.</p><p><b>Anyway, </b>I'm not saying that we've been drinking more than normal (although we have just moved house). But I do think I need to undertake more extensive research.</p><p>But has anyone else noticed that this is an issue for them or not, depending on what they've been drinking?</p><p>And, if there any brewologists out there, is there a scientific basis for what I've noticed? Or is it all in my head? </p><p>And finally, if anyone is having issues with their bladder and the idea of self-catheterisation is horrific to them, please hear this. </p><p>For me, it has been life-changing. Yes, it's undoubtedly a weird thing at first. But in my experience, after an initial period it simply becomes a question of logistics and preparation. And the benefits of uninterrupted sleep and the possibility of travel far outweigh the "ick." </p><p><b>Here endeth the lesson.</b><br /></p>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0tag:blogger.com,1999:blog-8031889641831063061.post-63620381844979922162021-07-29T21:36:00.001+01:002021-07-29T21:36:58.791+01:00where have I been? the answer will SHOCK you<p>That's my first attempt at <b>clickbait</b>. Sorry, Little Ms D spends a lot of time watching crap on YouTube! How am I doing?</p><p>Anyway, it's obvious that things have been quiet 'round here. And as I write this I'm waiting for my next Tysabri infusion to start. So strap in for a long post. </p><p><b>TL;DR we're moving house. </b> </p><p>To start I'll transport you to a simpler, more innocent time: December 2019. Did we realise how happy we were? Such innocence. </p><p>At this point our landlady informed us that she wanted to sell the house we were living in. </p><p>If you remember even further back, we needed to move into this house after a series of non-physical confrontations with our wanker neighbours. It was quite galling that we were forced to step off the property ladder but, seeing as I was fired/let go/made redundant from my job a couple of years later, this "temporary" move actually worked out ok for us. </p><p>So we understood why our landlady wanted to sell up. And she did get us out of a hole when we needed to move quickly. </p><p>But then 2020 happened! And the housing market stopped, so she wasn't in a rush to do anything. </p><p>So we basically spent all of that year trying to either buy the house or persuade someone else to buy it so we could continue renting. We weren't able to get a mortgage because my business had only been going for a couple of months by this point. </p><p>However, in January of this year, after a number of near-misses, we had to admit defeat. So since then we've been looking for somewhere else to live. And, as I'm sure you can understand, it has been pretty stressful and all-encompassing. </p><p>It hasn't helped that the rental market has gone bananas. We've seen houses and while we've been waiting to arrange viewings, someone has swooped in and got it based on photos. Which isn't an option that is open to us, considering my access requirements. </p><p>But we have managed to find somewhere to live. And it's another short move! Let's look at our past movements:</p><h3 style="text-align: left;">Mr, Mrs and Ms D - relocation, relocation, relocation</h3><p style="text-align: left;"></p><div style="text-align: left;"><ul style="text-align: left;"><li>living in a flat with arsehole late-night DJs, to...</li><li>three-storey townhouse - then moving SIX DOORS to...</li><li>purchase another three-storey townhouse, with arsehole neighbours either side - brief relocation to...</li><li>move-in with my in-laws - moving ACROSS AND SLIGHTLY UP THE ROAD to...</li><li>temporarily (*coughs* seven years) rent</li></ul><p>And now we're going ACROSS THE ROAD and SLIGHTLY FURTHER-ER UP. </p><p>Now this should be a really, GENUINELY temporary move before Little Ms D moves up to big school. By which time, we'll hopefully be in a position to buy a house. </p><p>So that's where I've been. Are you as shocked as my title hinted? </p></div>stevedominohttp://www.blogger.com/profile/08598042606017502408noreply@blogger.com0