Monday, 10 December 2018

Living with MS course - the conclusion

Last week saw the last day of my Living with MS course, and I really felt rather sad.

I realised how much I would miss being part of something like this. It was really good for me, meeting others who have MS, and being able to go through the therapy process together was supportive and reassuring. There's nothing quite like someone piping up and saying 'oh, I know exactly how you feel!' and you being able to believe them!

We became a support for each other, and I'm really going to miss having that weekly session.

But what has the course done for me?

Well, for starters I think it's helped my anxiety. I learnt lots of tools through the ACT and CBT systems that have helped me to rein in that feeling of dread and the other symptoms I was having. There were a couple of weeks where I felt too anxious to go, but I made myself which deserves a theoretical 'pat on the back'. I was proud of myself that I conquered it...but knowing I was going to a safe supportive place really helped the process.

I also learnt some really good mindfulness techniques. My favourite, because it was so simple, was just taking time to look at your hand. When you stop and concentrate on all the lines, textures and variations of colour, it's really very relaxing. Also it seemed like the best one I could do when stressed and out and about.

There were a few really good analogies that we were taught in our CBT lessons that I will take with me and use. One in particular, was imagining that we live our lives on a boat. We try and head in one direction, but sometimes things happen that alter our path. Sometimes there are stormy seas, and sometimes the other passengers (such as negative feelings) on the boat are altering our path also. Sometimes in life you just have to moor up on an island and take a break, which is something that really resonates with me having had periods with the bipolar and MS when life just gets too much.

Another thing that I found effective in the ACT (Acceptance and Commitment Therapy) side of things was to reassess the goals and values I have. There were goals that I have never achieved (such as working in television, but I have always stuck by my values (such as being a good Mum to the children). Sometimes goals and values conflict, but that part of the course helped me reassess what was more important to me, which of course is being there for the kids, my husband and living a happy and healthy (as much as possible anyway!) life.

As for anything else...that's all I can remember!! Luckily they gave out handouts! 😀
Ironically, the week discussing cognitive issues in MS, was an overload of information and a lot of it didn't sink in. I do remember being told how problems with memory (which I kind of knew) can be affected by tiredness and fatigue - which makes sense. There are certain levels of cognitive ability, and if you're tired it basically all goes to shit! So that explains a lot! At least it's reassuring to think that it's not my MS getting worse, just the fact that I rarely get a good nights sleep.

Anyway, if any of you with MS or anxiety/depression ever get a chance to do an ACT or CBT course, I say go for it! It's really helped and I've met lovely people. I'm determined to continue practising mindfulness on those bad days - though with Christmas coming up it's hard to practice  because I'm so busy. On the other hand, at least I'm distracted!!

No stormy seas at the moment!

Tuesday, 27 November 2018

Small victories (aka I managed Harry Potter Studios)

I should have written this post before the previous one - it's been sat in my outbox for ages!

I had a fabulous weekend the other week.

I went to London with my good friend Liz and we laughed and drank and relaxed and saw the Harry Potter Studios! Harry Potter was such a big part of my life growing up. I started to read the books fairly late at 18, just when I'd been diagnosed. I found the whole Harry Potter universe a fantastic distraction from all the shit that was going on, and it really got me through it. So it's very close to my heart. 

Going to the studios was a really big deal for me but I wasn't without anxiety (something of a daily occurrence now it seems).

Firstly the thought of driving to London made me anxious. As it turned out it was absolutely fine (despite the biblical rain on the way) and I realised that driving on one motorway (it was the M25 particularly that gave me the willies) was the same as driving on any other motorway.

I got there and we chilled out in the hotel spa for the rest of the day, had a lovely massage followed by a lovely dinner and many cocktails (pornstar martini - my new absolute favourite!).
Woke up bright and early on the Sunday, and headed over to the Warner Brothers studios. And what a day! If you are a Harry Potter fan, I heartily recommend it.

I took my mobility scooter which turned out was a good thing because I wouldn't have been able to get round the thing without it. I would have struggled to walk up the first concourse, which was like a flipping airport! It was perfectly accessible for wheelchairs and the scooter, and apart from a very bumpy Diagon Alley I found it a breeze.  Sure there were moments when it wasn't great being on a scooter (mainly people standing in front of me so I couldn't see the displays) but overall I felt comfortable and not too self conscious.

I found it so interesting seeing all of the behind the scenes stuff, though it kind of made me sad that I never pursued my dream to do something behind the scenes in film and television. I think I would have liked to do special effects makeup. I was often messing around with it in my room when I was younger, and seeing it all at the studios was fascinating. Liz said it's never too late, but I feel like I've missed the boat big time with it. If I did train up, it's such a competitive field, it's not flexible, I've been out of work for 8 years, and I'm disabled! Kind of think the cards are stacked against me!

Hey ho though. I was still good to go, and thanks to my dear friend Liz it was a great experience from start to finish.

In front of Dumbledore's office

Diagon Alley with Liz

I needed a few pics out of the scooter and I found a wand :D

Monday, 26 November 2018

Tysabri - Two Years on!

Today I had my 25th infusion of Tysabri - something of a milestone because I've now been on it for 2 years. Two flipping years.


1. Well, firstly, it's a great drug. I can do things now that I struggled with before I started it, and just having a bit more stamina has left me feeling more confident to take things on. This of course, is possibly detrimental considering my tendency to over-do things, but really it's helped my day-to-day life a great deal.

2. It's also stopped my relapses....for now. I don't want to get too positive about it, after all, how do I know I would be having relapses anyway, but as a guide I was having between 1-2 relapses a year before I started it, and since being on Tysabri I haven't had one.
I've had a couple of pseudo relapses, which again could have been the real thing that Tysabri was stalling, but who knows? It's all second-guessing.

3. It really doesn't hurt. Before I started I was terrified of the thought of having a canula put it every month for the infusion, but I quickly learnt that it doesn't hurt at all. Sure there's the 'sharp scratch' as the needle goes in, but aside from that it's fine. I feel silly for ever worrying about it!

4. I now live without side-effects. This is actually a really big deal that I don't take on board enough. When I was on Rebif, Avonex and then Copaxone, I lived with daily side-effects from the medication. Whether it was injection site pain or the flu symptoms I used to get after each injection (which was every day with Copaxone), life was pretty miserable. Now I have no side effects at all. The most I get is feeling tired after my infusion, but as I'm tired most of the time anyway I don't really notice!

5. Tysabri is good, so long as it's safe. I've spoken before about the JC virus, and because I'm negative for it, my risk of developing PML is 1 in 10,000. If I suddenly became JC positive, my risk drops to 1 in 1000. I can honestly say I don't think I would take the chance. Yes, if I came off Tysabri my health would potentially go down hill, but the thing that terrifies me is that as the symptoms of PML are very close to an MS relapse, and therefore I'm worried that I wouldn't know it was PML until it's too late. As it can be fatal, that's a big gamble.

6. It's made me connect with my MS team at the hospital. I know they've always been there if I need them, but physically seeing them every 4 weeks has become a good support for me. I feel like I can discuss symptoms while I'm there, instead of having to bother them on the phone - knowing for sure how busy they are! Because they see me more regularly they can tell when something is wrong. It was them that got me psychological help at the hospital for my depression and anxiety.

7. It gives me hope. When I was first diagnosed there was very little on the market to treat MS. The beta interferon drugs were only reducing relapses by 33%. Copaxone, which was the next drug I tried, reduces relapses by 34%. However Tysabri reduces them by 68%. What will be available in the future? Already stem cell treatment has shown amazing effects, but sadly little long term effects are known yet. However, it does leave me hopeful that someday there may be a cure.'s only when I put it down on 'paper' that I realise how much it's transformed my life.
Tysabri might not work for everyone, but I feel so lucky to have found something that works for me.
Here's hoping there are no hiccups, and I can carry on for another 2 years!

The 25th infusion