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. :)

-----------------------------

 - 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.

---

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.

You can find me on Substack - under the name Tales of Tingles

Hi guys! It's been a while since I posted on the ol' blog, but I haven't been silent! 

Time for a bit of an update -

ANY NEW UPDATES AND BLOG POSTS ARE NOW GOING TO BE THROUGH SUBSTACK, SO MAKE SURE YOU SUBSCRIBED!! Just click the link, then click subscribe to get new posts in your inbox. 

     

https://talesoftingles.substack.com/

  You can also follow me on Twitter (X)  @tinglymum.  (just click on the pic for link)

     Follow me at the Tales of Tingles page on Facebook (click the pic for link)

    And follow me on Instagram (click the pic for link)

So sign up to those channels, keep up to date, and get in touch :)

Crisis of Confidence

Launched into my 40s feeling great, but now I have a complete crisis of confidence and I feel like things are crashing down a bit. 

I was shrugging things off, but 

when I try to explain how I felt to my friends I was close to tears, which is a sure sign that there's a problem.  

However, I couldn't quite put my finger on what the one problem was (maybe it's more than one!) 

I guess the main problem though is that I've finally accepted that I can't work, which is really depressing me. I actually applied for two jobs at the beginning of last month on a whim. The first sounded PERFECT. It was working for a disability charity based in London, part time, working from home flexibly, and you needed 'lived experience' of a disability. The fact that I could potentially be working for an employer that truly understood disability and the limitations it has on working life made me excited. Sadly I didn't get the job (though I got a lovely response from them), but it felt good to get my CV up to date and apply for something. I also applied for a local job as an administrator, just 10 hours a week, so it would have been nice, but I didn't hear back from them. 

I had convinced myself that working is doable then of course, I have another bad patch. Spending random days resting/sleeping isn't conducive to a working lifestyle and I felt relief that I didn't get either jobs. I forget what it's like when I'm feeling well, which is crazy because it's not like I haven't had my conditions for YEARS and I know that it's not going away. When I'm well, I feel truly happy which gives me confidence to take on the world! Then that confidence evaporates and I crash, left feeling depressed and a failure. It's a vicious cycle. 

In my last post, I talked about what a relatively stress-free life I had, enabling me to look after my health properly, and if I found a job, I could potentially jeopardise this and make my health worse. 

Would it be worth it? No...I don't think so. 

So yes it's with a heavy heart that I've finally accepted I'm not well enough to work. If it was just the MS that's one thing, but it's the bipolar that is potentially more problematic when working. More importantly I've accepted that things aren't going to change and in fact they may get worse. However it's a bitter pill to swallow. 

Having a job and getting a bit of money would psychologically make me feel more independent which is important to me as a disabled woman. I know I don't need to work financially because Si is happy to support us all, but having some sort of independence is important to me. 

So I can't have a conventional 'job'. But I don't want to be stuck in the house all the time, feeling sad like I'm missing out on something. The prospect of what I'm going to do with my time is overwhelming me. There's a large part of me that wants to do something where I can convince myself that I'm 'normal'. Then I have to slap myself on the wrist because 'normal' is a bad word and it's not healthy thinking.  

What is normal anyway?!

I guess I will think on. I'm heading up to Cleethorpes to see my family for a few days, so I think removing myself from home and getting some headspace will do me good. 

Help me out though! If you have any ideas for anything remotely creative I can do, from home, flexibly, that will provide me with a bit of pocket money and give me a sense of well being, please be my guest! I've done a sewing business, I've done the cakes.... what can I turn my increasingly desperate mind to now?! 

40, fabulous, and feeling fine!

I turned 40 at the beginning of Feb and I feel great!

Not physically...no...but mentally, I feel great. Got a lot of aches and pains at the moment, and I've been suffering from a lingering cold for the past couple of weeks which has left me with awful catarrh.

I feel great mentally, because I feel like this is the first 'milestone' birthday in a while. I had a wonderful few days with family and friends, and felt royally spoilt. It's not often I do things where I'm centre of attention, but I went with it and enjoyed it immensely. I was shattered afterwards of course!

If I'm honest, when I was diagnosed at 18, I assumed I would be in a wheelchair by the time I reached 40. I was convinced! Even though I wouldn't say it was hanging over me, it was often niggling in the back of my mind (after all, who knows what's going to happen...it's an unpredictable disease) but, no. I'm not. In fact I'm thriving. 

I set myself a challenge to lose some more weight before my birthday, and I shed a stone over 6 months which was great (in fact showing me that I CAN do it)! I felt confident, got my hair done and felt like I could really ease into my forties with style.

Sure occasionally I have the odd wobble, where I think my mortality is catching up to me (don't we all?!), but overall so far so good. 

Life is cracking, compared to what it could have been. My MS is stable, my bipolar is fairly manageable, and I'm going to lose more weight to get down to a healthy BMI. From there, surely it's onwards and upwards? I mentioned on another post that my consultant was really pleased with my health at the moment, considering i've been diagnosed for 22 years. Nothing is certain with MS, and I know how lucky I am. I do feel that it isn't entirely by chance though. I do tend to look after myself pretty well, trying to get as much exercise as my body allows, and eating a varied diet. I count my lucky stars that I am mobile, happy, healthy, and feeling positive.

It's times like this though where I need to thank my beautiful family and friends for all of the help and support they give me. Because of them, I lead a fairly low stress life, which of course, helps MS and mental health conditions. I don't have to work, which I'm eternally grateful for and I have to ability to bumble my way through life. Doing things when I feel well enough, and resting when I don't. 

So here's to the future!

Me and Si