A risk I'm no longer willing to take - written in January 2024

This post was written for Substack in January, but wanted to include it here because of what's going to happen over the next few months. I've decided to post on Substack AND here, to keep everyone in the loop. :)

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 - Written January 2024 - 

Been a bit anxious recently. I found out that I’m JC positive (again) at the hospital the other day and alarm bells have started ringing.

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Photo by Diana Polekhina on Unsplash

As disease modifying treatments go for MS, I’ve been on a quite a few.

After being on a drugs trial, it started all those years ago with Rebif injections in 2003. Tried it for 4 years, and they concluded it wasn’t doing anything because I was still have the same number of relapses. Bear in mind please that I had a fear of needles, injections and HATED my autoinjector.

I changed to Copaxone in 2007. I hated that too! Injecting every day was awful. It used to take me half an hour of sitting there to pluck up the courage to do it! My mental health was not good.

Again, it was concluded that it wasn’t working, so next I gave Avonex a go (after being turned down for Tysabri) in 2008 for two years before I stopped to start trying for a family in 2010.

When I was done with having kids, the next up was Tecfidera, an oral medication. Great!’ I thought ‘no more needles!’. Yet again, Tecfidera just wasn’t doing it and when I went back to 2 relapses a year, I was accepted to start Tysabri.

That was in 2016, and started in the December of that year.

Tysabri wasn’t perfect for sure. It was a highly effective drug, but there was a higher risk of a brain infection called Progressive multifocal leukoencephalopathy (PML). The risks were fairly small…I think when I first started it was about 1 in every 10,000 of patients on Tysabri.

A risk I was willing to take for a better quality of life. I was a Mum now and needed to do what I could to make things easier for me and the whole family. It wasn’t that I disregarded the risks, far from it, but I was just willing to give it a shot.

Anyway, time passes so quickly, and before I know it I’ve been on Tysabri for 7 years!

It’s been a marvel, it really has. My fatigue is better, I’m fairly stable MS wise with no major relapses since starting. Considering I was having, on average, at least 1 every year since diagnosis in that was incredible!

So what’s the hitch?

Well, they test you for something called the JC virus when on it. If you are JC positive, your chances of getting PML greatly increase. I became positive a couple of years ago for the first time, and it was a shock. It gave me a wobble, and I gained the advice of my consultant at the time. He advised to stay on it, as even though I was JC positive, the risks were still quite low. I had to weigh everything up, and I decided to stay on it.

I went back to being JC negative until recently where I got the shock again of being positive. Now I thought…I really need to think about this.

The amount of time I had been on Tysabri (the risks increase for every year taking it) plus now being JC positive again meant my chances of getting PML had increased to about 1 in 1000.

Nah. Can’t do it.

For me, that’s too high…and I’ve started feeling like a ticking time bomb (excuse the over-exaggeration).

So I have it in my mind to change, even if it means going downhill. Or having to do injections again.

The issue is that even something like Kesimpta (the drug I was thinking of changing to) there’s still a PML risk. There haven’t been any cases of PML with Kesimpta patients, but there are still risks and I guess they have to cover their backs by issuing the warning.

I feel completely between a rock and a hard place.

On the one hand, I stay on Tysabri pretty much symptom free, with a 1 in 1000 chance of developing PML. (To put things into perspective….you have 1 in 1000 chance of cracking an egg to find a double yolk. And that’s happened to me twice in the last couple of years.)

OR…I come off. Reduce the risks of PML, change to something else (as highly effective as Tysabri apparently) but potentially start to feel like sh*t again in the meantime. I’ll be at risk of a humdinger of a relapse coming off Tysabri, that could do immeasurable damage. But again….that’s a maybe. Worst case scenario kind of thing.

So yeah….I’m stressing out here folks! My gut reaction says come off Tysabri. We have an unlucky family when it comes to illness and chronic conditions, and I feel like I’m tempting fate.

I guess I need to assume I’m going to go downhill and plan accordingly. But it’s soo hard. I don’t want to go back to that state of health (or worse) that I was in before! You have to remember that I’ve been diagnosed for nearly 23 years, and so my chances of feeling better without Tysabri are waning. Disability will come creeping back.

Gah!

I think I’ve decided to come off for now, but it still needs to be signed off by my consultant and a committee before I can stop so I will keep you posted.

For now, all I can do is be proactive and positive about this change. Firstly, get healthier by eating better and looking after myself. Reduce stress as much as possible - because we all know what THAT does to MS, right? - and keep an eye out for the signs of deterioration and don’t push myself.

Best laid plans and all that!

Until next time….eeek.

New Year, New Me? I doubt it!

I've decided not to make any new years resolutions this year, apart from one - be kinder to myself. 

No more resolutions to lose weight, drink less, do more exercise....I never stick to them and then I feel like a failure. 

No, 2022 is the year I try and be kinder to myself. If I feel low and eat some chocolate? So be it. If I fancy a relaxing drink with my husband? Go for it. If I'm too fatigued to sustain an exercise regime? Bugger it. 

I know I should lose weight, but I've realised that to make those changes, with me, changes need to come from within. I need to stop beating myself up for not being a certain size or shape. My body is a product of having children. It's the product of my disability. And it's just the way I am at the moment. 

I feel that what will be will be this year. 

One thing I am going to try and do for myself though, is do more art. I find it very therapeutic, and enjoy it. Si got me a load of art stuff for Christmas, so I really have no excuse now. We've touched on artwork in my counselling sessions, and I'm going to try and express my emotions more through my art. It can be a very powerful medium. The first picture I did of the year was of a sunset. I had a photograph of an amazing sunset I took with my Dad, the first time I took my new camera out when I was in my teens. It was a special memory for me, so putting it into a painting was a lovely feeling. 

My sunset done with metallic acrylic paint

Another thing I'm going to do, to be kinder to myself, is do more mediation and mindfulness. Again we've been talking about it in counselling, and it really can be beneficial for me. That feeling of peace you get when meditating is lovely. Hopefully I'll be able to work my way up to doing it every day, though that might be a bit ambitious!

Times may be hard this year - lets be honest the last two have been hard enough as it is, but stepping forward with kindness and compassion to myself is the way to go I think. I need to accept that I have limitations, and if I need to rest I need to rest. It's not laziness. 

I hope 2022 is a good year for you all! Are there any resolutions you've made? I'd love to hear them! Post in the comment section below.   

  

The Benefits of Counselling

Last month I made the huge decision to give counselling a go. 

It was such a big decision for me, because for many many years I've thought about doing it, but have been put off by my own hesitant self. I was worried about opening the flood gates and not being able to cope with it. 

I had so much stuff to unpack I thought it would just be too much. Too much emotion. 

If I changed as a person or my outlook changed, would it up-skittle things? I wasn't expecting miracles, but surely some personal growth would come from it? What if people did like the new confident me? (I say that with a slightly wry wink). 

I suppose that's the whole point though. You unpick this stuff in counselling in order to be able to deal with things properly, not change them. I'm hoping Mandy (my counsellor) can give me some tools to deal with the bad times. 

And so far, so good. 

Making peace with not working

Mandy is great. She'd understanding, helpful, friendly, and has for some reason having a stranger tell you things seems to make it sink in. 

When I was telling her about my constant quest to find some sort of job that fits with my MS and bipolar, she said 'You already have two jobs. One is to look after your family, which you are doing brilliantly, and the other and more important one, is to look after your health.' My Mum especially has said similar things to me in the past, but for some reason it sunk in with Mandy. The fact a stranger can look at my situation and go 'are you mad?!' felt like pressure had been taken off my shoulders. 

I had always felt this drive to work ever since I was young, but accepting that that's just not my path these days has been a big step. I've never considered the fact that just looking after my health is a job in itself. I need to stay flexible enough to be able to rest at the drop of a hat. Especially when I take into account that already have a job looking after my family. 

Mindfulness

Another thing I've taken from counselling so far, has been the importance of mindfulness. I confess, I don't do it as much as I should, but I find when I do meditate and do things mindfully, it really benefits me.

Firstly, it calms me down if I'm a bit manic, which is always a good thing. Especially when my mind and body hasn't linked up, and I'm doing too much when I'm actually exhausted. It allows my mind to switch off, which in turn switches my body off for some much needed rest. I can see it's going to be a real benefit over the Christmas period. 

I use the Headspace app, which is great. There are different voices to choose from, and they have all sorts of relaxing things on there, from music to mediation. You do have to pay (I think the standard price is £49 a year) but they are always having sales on - I think I paid £24 for the year which I don't think is a bad price. The aim is to do a little bit every day. Mandy said on average people should aim for about 45 minutes of mindfulness a day, but that doesn't need to be in one chunk of mediation.

Mindfulness can be practiced at any time of the day (whereas mediation is a bit more full on) because it's all about paying more attention to the present moment. 

How to be mindful

All you have to do is relax, take a deep breath, and really focus in on what is happening at that point in time. 

Say you're having a shower - close your eyes and listen to the water, feel the water on your body, imagining every droplet. Take note of your feelings. How does it feel? Be aware of your thoughts and feelings from moment to moment. Is your mind racing? Are you finding it hard to relax? Don't worry about what you are thinking, or if your mind is elsewhere - just be mindful of this. 

Before you know it, you've done 10 to 15 minutes, and then do this three times a day and you're all set! :)

Conclusion

So far counselling has been a great experience. Mandy is very mindful of my mood and whether I'm tired, and if I get emotion, we take things very slow. As far as I'm concerned this is going to be a long term process. 

I do find the therapy draining, and I'm glad that it's on Zoom at the moment and happy for that to continue. It's nice knowing I can be in a quiet personal comfy space, and when it's done still be in my own space without having to drive back. 

Sure it's expensive (each session is £40 - another reason why I put it off for so long!) but as far as I'm concerned so far it's been worth it. It's amazing how not having the money to spend on crap (which I would undoubtedly do) hasn't bothered me. 

So for now - all I can say is I'm looking forward to this journey. May ghosts be laid to rest, and positivity reign! 

Busy times

It has been a busy and difficult week....

Firstly we finally did our (me, and my friends Rowan and Elaine - along with the PTFA) clothes sale at school. This clothes sale has used up the majority of my energy over the last month. Firstly, we had the clothes donated, then they came to my house to be sorted. Then I collected 12 rails from a church nearby (with my friend Nairn), and 400 hangers from the local shopping centre. It was a lot of running around for me, and a lot of sorting over the past few weeks. However, as much as I ached and felt tired, I got through it! The actual clothes sale wasn't quite as busy as I would have liked, but we made about £200 which was good. The whole experience was really full on, but I do feel a sense of achievement after it. I was worried it was going to put me off joining the PTFA, but it hasn't. I have realised that I need something to keep my mind busy once Ed starts school in September. Without something to keep my mind busy, my anxiety shoots through the roof! It's tricky though because talking to people I don't know makes me feel anxious, so joining the PTFA could be anxiety inducing....yet I'm doing it because I'm hoping it will help my anxiety! Catch-22. I think the reason I want to make myself do it is because it will hoping put me out of my comfort zone, ready for me to do hypnobirthing training and setting up the business next year. 

Only time will tell whether it helps.

Talking of anxiety though, there have been two brilliant documentaries I've seen recently about anxiety and depression, that I wanted to tell you about.

The first was Louis Theroux's: Mothers on the Edge, which covered mothers living on a mental health unit after giving birth. It made me feel extremely emotional because it brought back how I felt after giving birth and beyond.  The anxiety and awful depression, did, in my eyes, impact on my relationship with the children when they were young. I always felt a lack of connection because of the depression, and found it all just so overwhelming. As one mother said, you're taught that you'll receive this rush of love when you see your child, and for me, and her, it just didn't happen. Obviously I knew that I loved them, but the depression and anxiety got in the way of those feelings and just put thoughts of self-doubt into my head. It was a tricky time, and the documentary brought it all back. 

The second documentary, was Nadiya: Anxiety and Me. This followed baker and celebrity Nadiya Hussain as she started CBT therapy for her anxiety that she had been dealing with since a very young age. Weirdly watching it, made me feel more anxious myself. Nadiya suffers worse than me, but it brought those feelings home again. Like me, Nadiya found that she needed to keep busy to combat her anxiety and panic attacks. Luckily I haven't had a full blown panic attack for a while, but I often feel on the edge of one.  One interesting tip was not to breathe in and out to try and calm breathing because often this can make things worse. Instead you need to go to the source, of why you are panicking in the first place. As I learnt in my CBT training, you need to stop, take a step back, assess the situation and try and look at the feeling objectively. 

Now I've calmed down a bit though, I thought a spot of writing would help - hence this blog post. 

One great thing that happened this week, was that I met up with my friends from the Living with MS course I took last year! We finally got around to it, and it was lovely. 

It was so nice to be around people that you know really 'get' MS because they live and breathe it too. Hopefully we'll be meeting up again soon. 

What else happened this week......of course! It was Ed's birthday!! (I told you it was a busy week!)

My little man is now 4 and growing up at the rate of knots. It was a lovely day, and full of all things Lego and Star Wars related. I made his cake after a final clear out and tidy up at school after the clothes sale (I never want to see a rail or hanger again!!) and impressed myself. 

Ok, so as with all of my cakes, you never want to look too closely at the details (I can't ice a cake to save my life!) but Ed didn't seem to mind. He was just chuffed he got a Jabba the Hutt to add to his Lego collection. :D

So there you go, it's all been whirldwind of clothes, cake and birthday fun. We've got Ed's proper party on Saturday then hopefully we're going away to West Bay in Dorset again for a few days in half term. Living life to the MAX. :)

My not-so-little boy, with his not-so-little cake!

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!

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.

So..thoughts?

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.

Hmm....it'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

Making time for myself

So the latest bout of depression has been and gone... thank goodness.
It was a tough time, but I feel completely back to 'normal' now.
As with the nature of the Beast though, a low period means it's usually followed by a high where I try and over-compensate with the kids. This time I've tried harder though to keep myself on an even keel and it seems to be working. Things are stable but we're still managing to have some fun.

I've realised that I need to make more time for me and try to become a bit kinder to myself. Yoga has helped a huge amount with that. I started in the New Year because my back was hurting horribly. Now, at the very least, on a Tuesday and Thursday morning when Ed is at Kindergarten I take the time out to do at least half an hour. Its relaxing, good exercise and... grounding, which is really what I need. Especially with the bipolar. It makes me concentrate on myself and how I'm feeling.
I've been following a programme on YouTube called True: Your 30 Day Yoga Journey, hosted by a wonderful teacher called Adriene. I was a complete beginner (well, I still am!) and I've found the course supportive and gentle. Perfect for the MS. My back and legs have both improved through the practice and my core strength is better.
I think it helps with my confidence too because every time I complete a session I congratulate myself for turning up and giving it a go. ☺

I need to get into writing again too and keep up to date with this blog in particular. Documenting my thoughts and feelings is also a kind of therapy for me.
So here I am, at soft play while I wait for Lib to finish drama, writing this post. Having screaming kids running around me isn't quite my idea of 'me' time, but it's a start! If I can take little moments for me amongst the madness of life I'll be on the right track.

With or without health issues, it's so important for any Mum to make time for themselves. It's Mother's Day on Sunday. Make it count by doing something for you. 😃

At Playspace...trying to look sane. 

Tysabri Take 2

From one extreme to another, eh?

First exhausted, now feeling great.

I had my second dose of Tysabri today, and what a bloody marvel!
As you know I had gone downhill this last week but I woke up feeling pretty positive. All went well at the hospital and after two hours I left feeling pretty buzzed up. Firstly, I hardly felt having the canula put in, which is always a big plus (I have a bit of a fear of canulas after a really bad experience in hospital once), and secondly there were no side effects again aside from a bit of light headedness.

Within an hour or two I felt great and was practically skipping when I gave the dog a walk. I'm sure a lot of it is psychological, but then my MS nurse did say she had had other people who have seen a real benefit to their day to day lives. It  turns out that the flare up in MS hugs is down to Tysabri too, but if anything it shows that it's starting to work and hopefully that'll subside with time.
All in all Tysabri is turning out to be a really positive experience, which is...unexpected. Any treatment where I'd have to be in hospital every month in the first instance would be viewed with dread, but I found this morning I was actually kind of looking forward to it. Now I remember why! Let's just hope it actually reduces relapses and the bad side effects stay at bay...

 Round Two commences...

Tysabri and less tingles

I know I know. It's been an age since I posted. Slap my wrist, and all that.

However, I feel that considering how the year has gone my delay is justified. It's been busy, and emotional, and tiring and just bleergghh. But things look to be on the up....thank god.

Firstly, the bipolar meds have finally been tweaked enough that I feel positively 'normal' (whatever that is!) so I feel like I can draw a bit of a line under that fiasco. No longer will I be manically obsessing over things, and being Mrs McTwitchHands. I feel like my personality has come back and I can see things positively now. I used my manic energy to sew things, which yes I became obsessed with, but it all culminated in me selling my wares at a Christmas market this week. I felt like I'd turned the situation around, and I felt so proud of myself.

Along with this also comes the new MS development – Tysabri.

Basically It's taken the best part of 6 months to sort out my treatment after having two relapses this year. There was a lot of debating and umming and ahhing, and I finally went with the drug Campath. Except I didn't. Because someone died who was having it in the MS unit. Awfully sad, and it made me think twice about the risks of having such a powerful and long-lasting treatment. Though good in some ways, the fact that I would have 5 days of nasty infusions then nothing for a year, ended up filling me with dread. After all, what if I got any bad side effects? There was nothing that could be done. It's not like I could stop taking the tablets, or stop the injections.

No, I couldn't do it. So after Campath, the next option was Tysabri. An infusion once a month, that lasts an hour, and potentially could reduce relapses by 80%.

Of course, this treatment also comes with its serious risks. There is a very small chance of developing a brain infection called PML which can lead to severe disability and even death. Scary stuff. Though luckily for me, I don't have an underlying virus called the JC virus. That means my odds of picking up PML are about 1/10,000. If I'd had the virus that would have dramatically dropped to 1/1000.

I decided the risk was worth the benefits (it really is meant to be a great drug), so I had my infusion last Friday. It was as peachy as someone stabbing you in the arm ever can be, and it was simple. My MS nurse said, as I'm rigged up to the drip, it was actually 'enforced rest' for a couple of hours. True enough...though that does make it sound positively pleasant. It wasn't. Hey ho though..it could have been a lot worse I guess. My next infusion is on the 6^th January, so I've got the fun of Christmas and New Year before I get stabbed again.

I heard great things about how effective Tysabri was from others having the treatment at the same time, and I have to say I'm seeing benefits already. It may be psychological, or coincidence, but my walking definitely seems better. I'm able to walk further without stiffening up, and I'm getting less achy pain in my legs and less tingling. I should be ecstatic, but I'm too much of a realist. Surely it can't be that effective?1 Whatever the reason though, improvement is good. It's looking like 2017 is going to be a better year.

I will dutifully keep you posted, and until then. Deck those friggin' halls!  

Tecfidera and all that jazz

Well I promised a post about Tecfidera, and I figure I'll try and keep it up..just to remind myself when I'm old and grey and driving a car that flies or is on some kind of monorail system like in Minority Report.

So the first week is done. BOOM! In the bag! 

It was fine. Which is weird for me to say, seen as I've felt pretty rubbish over the last few days...but that could have been for a number of reasons. Like having MS for one. After all, Tecfidera isn't a miracle cure, so the usual symptoms can certainly still be expected..especially seen as it's early days.

I consider the week to be fine though, because the side effects weren't as EPICALLY awful as first feared. They definitely gave me the worst case scenario at the hospital, which I admit was a good thing because what I felt seemed a walk in the park! I got bad flushing the first day (my ears went bright red but sadly I didn't take a picture... I've improvised below though..) and got really itchy all over, but that has subsided as the week's gone on. I've had some awful headaches and generally just felt bleeurggh, but as my MS nurse mentioned that I might want to tear my skin off because of the flushing, I think I've gotten off lightly. Either that or it was always going to be fine because she's nuts and prone to exaggeration! (I'm kidding, Kelly. ) 

I've made sure I've stuck to the advice of having a good meal to line my stomach before taking it, and I've had aspirin on hand...so all is goodish so far. However I move up to double the dose tomorrow, so I'm sure things will flare up a bit again. If I start to struggle though, I'm totally going to treat myself at the end of each week to keep me going until Week 12 - the week of relief from side effects apparently.

Huh. It'll basically be like going through my 1st trimester of pregnancy again. Whoopee doo! *roll eyes*

More next week...