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.

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 -

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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

Bipolar at Christmastime

 

I'm sat writing this after my third night of not really sleeping. 

Photo courtesy of Alexandra Gorn - unsplash

I've had an awful cold, but the worst has happened - I'm having a manic episode at the same time!

My body needs rest and I'm exhausted, but my mind is CONSTANTLY whirring away making good sleep nigh on impossible. I've caught the odd hour here and there, but I'm getting really tired of this now. Then it dawned on me....it's because of the time of year!

I was the same last year on the run up to Christmas. My mind whirls with too much over stimulation, it goes haywire and I switch into manic mode. 

It is making things incredibly challenging. At this rate I'm going to be burnt out by Christmas, which is no good. I've tried meditation, reading, listening to calming music, warm baths, you name it, but nothing helps. I just can't switch my brain off. 

There's an immense amount of pressure that I think a lot of people heap on themselves this time of year. I just want to make it great for everyone but in doing so I'm in danger of missing it completely. I confess that sometimes I would self medicate with a glass a wine to help me get to sleep, but I've been off my food and definitely don't fancy drinking with this cold. In my experience, it only makes it worse. 

My last resort, of which I am putting into practice today, is getting some Night Nurse, and hoping that it keeps the aches, sniffles and insomnia at bay letting my fall into a deep and restful sleep. 

Bipolar is a challenge without a doubt, and in some ways, if I'm manic it helps this time of year because I have the energy and inclination to do everything. It's like I see it as a big project that needs completing and I kind of come into my own. I truly love Christmas. I love the choosing of presents, giving, cooking, eating...you name it, I love it! 

Hopefully this cold will be well and truly gone before then (we have 4 days left) and my mania will have subsided enough for me to catch up on some sleep! 

I think I'm going stir crazy as well though - maybe a walk today would help? I've been so lacking in exercise recently. Everything goes to pot when the kids are off school because I don't have the school run to get my exercise, and having this bad cold has meant I've been too fatigued to take the dog out. I'm sure it's all related and it makes my bipolar worse.

Anyway, we shall see. 

I'm sure things will straighten out, and we'll all have a great Christmas! And may I wish you all a wonderful holiday time!! See you on the flip side in 2023!

xx

Navigating London and other stuff

This post is well over due.

It's all about the October half term,  but now Christmas is creeping up and it's been sat in my draft box for ages! I just haven't been in the right frame of mind to write. It normally comes quite naturally to me, but recently it's like staring at a blank wall. However, I thought I should persevere and finish this post, because half term was a really big deal for me. 

So here we are....

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I was knackered and frazzled, but we had a great time at half term.

We decided to stay in London for a couple of nights, mainly to see My Neighbour Totoro at the Barbican Theatre. 

To many this wouldn't seem like a big deal (after all it's about one and a half hours on the train from Bristol) but to me, it was a MASSIVE deal. 

I hadn't experienced London with the kids before, and I hadn't been for a very long time (when I had better stamina).

I had built London up in my head to be this traumatic place where I would really really struggle. I worried about the practicalities of actually getting round, and the mental impact being in such a busy place would have.

But.....I did it. I coped. And yes I was exhausted afterwards, but it's done and it really wasn't as bad as expected! The kids were fantastic, and we all loved it. 

Si and Ed navigating the Underground

My main worry was whether I was going to cope with all the walking - particularly getting from one place to another in the Underground. I remember long concourses, and having to stand for long periods on the actual train, having no chance to rest. But actually, it was fine. Sure there was a lot of walking, but the actual trains were eerily quiet so more often than not, I managed to get a seat. Si planned our routes well, and because the flat we had was down the road from the Barbican, we were fairly close the the Barbican tube station, and therefore on the Circle line. From there we could get to where we needed to go easily and without changing. Like I said, we were lucky in the fact that I managed to get a seat. If we'd travelled in rush hour,  I'm sure it would have been a different story. 

The Natural History Museum 

I took my folding stick with me, but only needed it on the second day - when we went to the Natural History Museum. Even then I managed the Museum without the stick and it was only getting back to the flat where I struggled a bit. It was very busy at South Kensington tube, near where the museum is, so I did do more standing around then. 

The Blue Whale

My Neighbour Totoro at the Barbican Theatre was awesome! 

My Neighbour Totoro is a Studio Ghibli film that came out in the 1980s, which is charming and lovely, and the theatre production of it did not disappoint. As a family we've always been a big fan of Totoro....ever since Lib being a toddler where we used to sit down and watch the film together. I found the theatre production emotional because all of these memories came flooding back, and I don't mind telling you that I got a bit tearful! We all adored it and would highly recommend it. 

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So yeah a big milestone for me, and I think it's all thanks to Tysabri. It's given me my stamina back. 

'Doing' London unscathed has given me so much confidence though to try and do more and different stuff. There's a fine line between being practical and cautious, and pushing myself to do a bit more though. Sure I managed our London trip, but that was a few days out of many....and I shouldn't assume I'm always going to manage things like that. For example, I wouldn't have been able to manage it this weekend.

A case in point though is when we go to Slimbridge Wetland Centre. I nearly always hire a mobility scooter because it's quite a lot of walking. On the one hand, it seems sensible to preserve my energy, but London has given me the confidence to try it without the scooter, and relish in getting the exercise. 

And exercise is key here. 

My weight loss journey is still on-going (I've lost nearly a stone so far) but I need to push on, so exercise and maintaining that 'gumption' is needed. I always find it hard to motivate myself in the winter though....I just want to hunker down and hibernate (like most people!). The frustrating thing though is that I know I'll feel better and have more energy when I've lost weight...it's just getting there. 

But Christmas is just around the corner...and my 40th birthday after that....so celebrations will be abound and I. must. not. put. it. all. back. on! 

Dysphasia and Acid Reflux

I had an endoscopy the other day.  

I couldn't have the sedative (stupid low blood pressure) so had to do it without and it was frankly brutal.  

I managed to remain calm, but it left me feeling battered and bruised and I had awful nightmares afterwards.  There's something about a big black tube being inserted down my throat that gave me the real heebie jeebies. 

But why did I need it? Well, it started with dysphasia (trouble swallowing) which had been going on for a month or so. Dysphasia is a common symptom of MS, so I kind of shrugged it off as that, but then I noticed I was getting a poorly tummy EVERY lunchtime.  I would eat lunch then things would.... and I apologise if this is too much information.... but things would just erupt. Again, I sort of stuck my head in the sand about it. I had also been getting a lot of heartburn and just felt...unwell. 

It was only after talking to my Mum about it that she gave me the answer (at least I hope it's the answer).....acid reflux. She suffers from it herself,  so could see all the signs. I went to the doctor, and she said she wanted to do an endoscopy just to make sure there wasn't anything untoward happening. She suspected it was acid reflux though. 

They did the endoscopy and took some biopsies to check some inflamed areas for infection. I haven't had the results back yet, but have been given a recommendation for a medication called Omeprazole that can help reflux. 

We're currently on hols,  but I've been trying the meds for the past 5 days. So far so good, though the first couple of days they did make me feel a little nauseous. 

I'm always keen to see if i can help matters without medication though, so, after doing some research,  I've decided to cut back on coffee, tomatoes, onion,  garlic, chocolate, white wine, and I'm pretty sure dairy aggravates it too. That doesn't leave much else!! That's pretty much all i used to eat..... hence the reflux I guess! 😂 Obviously my diet has been pretty poor this holiday, but I intend to get back on it when I return to Bristol.  

I'm trying Omeprazole for a month,  but if can manage things without it, that would be good. 

Sometimes I just feel like there's ALWAYS SOMETHING, you know?! Can't seem to catch a break. If it's not MS, its bipolar,  anxiety, and now acid reflux and a horrible endoscopy. Sometimes it must gets a bit much. However I do feel like I don't do myself any favours. My health would improve (hopefully) if I lost weight, and there's only me holding me back. I figure I have to see this as a challenge and meet it head on. 

Dealing with an Emotional Child

Health Update

A couple of weeks ago, I was suffering from spasticity and other symptoms......I'm pleased to say things have calmed down. 

I spoke to my consultant on the Friday who, when I told her my symptoms, was sure it wasn't a relapse. Thank lordy! She is going to refer me to physio for my right leg (which keeps stiffening up when I walk), and I have to talk to the doctor about my arm which is still bothering me. 

Now I'm feeling better though, I look back and realise that I was panicking for little reason. I've had so many pseudo relapses whist on Tysabri, you'd think I'd know the pattern by now. However, when you're in the moment, feeling like poop, it's hard to see the wood for the trees. It's been 6 years since my last relapse, so I find it hard to remember what it really feels like. 

The Emotional Rollercoaster

This week has been an emotional one for me. We're finding Ed's behaviour very challenging, and as I've dipped into a depressive state, it's taking it's toll. Ed's always been very sensitive, but as he gets older, his mood swings are becoming more pronounced. He lashes out, shouts, and throw things (the classic tantrum) when he doesn't get his own way. Obviously he's bigger now though, so the effect is more alarming. 

The 7 year Milestone and Adrenarche

The 7th year is a bit of milestone in a child's development. Not only will reading and writing move in leaps and bounds, but they become to be more aware of their surroundings, and their place in the world. I found this useful article that also describes how children become more empathetic. It doesn't feel like that most of the time, because Ed seems to get lost in his feelings, but a case in point, I couldn't help but get upset the other night due to another battle to get him to bed. I was super tired, and his behaviour just hit me at the wrong moment. I started crying and after a few minutes, he stopped what he was doing, and came over and gave me a big hug and told me he loved me. I thought we had turned a corner, but alas, the behaviour came back the next day. 

It's also a milestone hormonally, as adrenarche kicks in. This is the 'awakening of the adrenal gland' responsible for making hormones. 

"you may notice your 7- or 8-year-old seems angry or tearful for no reason as they struggle to process their emotions. They may start falling out with their friendship groups or their behaviour may seem uncharacteristic."

This makes a lot of sense to me, as I know how highly tuned Ed is. I can also see it in his friends, and the changing way they deal with one another.  

 

Dealing with an emotional child 

Like I say, I've found the whole situation very hard to deal with, especially as I feel emotionally vulnerable myself at the moment. I looked on google for some tips on how to deal with an emotional child and came across some great advice from real parents.  

"Be open and honest, even if it’s difficult at times."

"Be empathetic. Do not give them a solution. Rather coach them in finding a solution."

"Love them in those moments as this IS when they NEED you the most!"

"Try to understand that the problems they are facing are a huge deal to them. Recognise that they have real issues, albeit unrealistic to you."

Getting to the bottom of things

We suspected that Ed wasn't happy about something outside of the home, and when we quizzed him, he confessed that some of his friends had been unkind to him in the classroom and at play. This also actually happened a couple of months ago where there was an incident at play where he was surrounded and people were throwing grass at him. We spoke to the teacher and she said she'd keep at eye on him, but it appears the problems are persisting. One thing I will say though, is that all his peers are obviously going through the same thing emotionally at the moment, so I think it's easy for games to get out of hand, and comments made to be taken on board as hurtful. These are emotional kids we're talking about! Ed seems to still want to play with everyone, so I don't think he considers himself bullied by anyone in particular, I think it's more that a little fly away comment or action by someone is really hitting home at the moment. 

The time in the day when it's at its worst is bedtime though. It's a melting pot of emotions and tiredness, and since it's been lighter in the evenings Ed's finding it really hard to settle down. This means if Si and I are both tired, it makes it doubly challenging. Bedtime can take around 2 hours at the moment and often it is 9.30/10pm before he falls asleep. Obviously these later nights are going to play havoc with him anyway, so it feels like we just can't win at the moment!

Moving On

I must try and get my emotions in check when dealing with Ed, though it's easier said than done. However, the other night, I think it actually helped Ed to see me upset because it brought home that his actions have consequences. I'm me, and I'm just doing my best. If I get upset so be it. However, when I'm not depressed it's a lot easier to deal with because I feel less raw. 

Bedtime is a challenge, but I half think we should just stop the battling and let him go when he's tired. However, that could easily bite us in the behind as he stays up later and later because of the novelty. The summer holidays might be the time to experiment. I find the whole bedtime routine challenging though because I get so tired and exhausted by 8pm, so often I have to go to bed myself, leaving Si with the brunt of it. He's a true SuperDad!

I know this phase will pass, but in the eye of the storm, it's hard to imagine.

Photo by Johannes Plenio on Unsplash