Here I Go Again
A short update on where I’ve been, where I’m going, and a couple of questions you might be able to help with.
It’s probably not the best idea I’ve ever had to write a comeback piece for this blog in the middle of an uncharacteristic May heatwave here in the UK. But the power of the sun has forced me inside, MS legs bending and stiffening (somehow it feels both are possible simultaneously) under the weight of heat intolerance. I’m seeking the lower temperatures at the back of the house and my super-strength cooling-fan. And it looks like I can type, horizontal on my sofa, propped up with a cushion, into my Notes App, with chill air blowing over me. So I’ll crack on.
I hadn’t intended to take a break from writing for so long, or indeed at all. Back in early Autumn I mused whether I could ‘handle the seasons of my life’. Over the next couple of months the low I was experiencing morphed into a long and pretty horrible bout of anxiety, and consequent insomnia. Winter was harsh. The sleeplessness in turn fuelled the anxiety, which fuelled the lack of sleep… and so it went on. Although I continued to write sporadically for a couple of months, by the time it came to edit, my sleep-deprived state meant I couldn’t function well enough to concentrate. And it felt like my anxious state was never going to change.
But slowly, it did. It’s late spring now and I am feeling well again. I’m not exactly certain what worked, or when the shoots of recovery started to appear. I’m sure the support of the people who kept checking in on me, and my persistent attempts at breathwork, meditation and showing up for life when I least felt like it had something to do with it. And of course, a good and kind therapist, was worth her weight in gold.
I will write about my experience of anxiety at some point in the future. This recent episode is not my first. I’m aware that its prevalence amongst people with MS is higher than the general population, so publishing a post about it might be of use to someone else.
For now, I don’t really want to hang out with anxiety again for at least a little while. Going forward, I have lots of plans and ideas for what to write about. It seems there is never a shortage of topics. Most subjects are not light and fluffy I’m afraid. Like dealing with isolation, envy, grief, whether I really have the right mobility aids, and what can happen when everything that can go wrong, goes wrong in a single day. But there’s also purpose, privilege, joy, and the good that has come out of this diagnosis.
I was very sad when I stopped being able to show up every month with a piece of writing, and I missed the connections I make with people here. So I am delighted to be back.
Life continues to pelt rocks at us, as well as drench us in glorious sunshine. In the last month, four of my best and closest friends have either been handed crappy diagnoses or are having serious health issues of their own to deal with. My heart goes out to them all as they navigate through and do what they need to do. Sending love 😘😘😘😘.
And as for those questions, some of you might be able to help.
I’ve recently become eligible for Siponimod, which is the only licensed DMT (Disease Modifying Therapy) in the UK for SPMS (Secondary Progressive Multiple Sclerosis). It’s an immunosuppressant, and having been diagnosed with SPMS from the get go, but not eligible for treatment until now, I’ve never had to consider the impact of of living with a suppressed immune system due to medication.
So considering this is all new to me, I wondered how, if you are on any DMT that suppresses your immune system, how you deal with that, what you do to mitigate against infection, and just generally what your experience of being immunosuppressed has been?
And if you are taking Siponimod, what has your experience been like overall? I have research to do, and I don’t like the sound of the side effects, but I guess that’s DMTs for you…
Thank you for reading.
Jane 💛
Hi Jane. Nice to read your words again.
I’ve been on Ocrelizumab since last July and previous to that was on Fingolimod for a while too.
I try not to get too anxious about the immunosuppression. I’m not going to let that stop me enjoying life and spending time with other people. Do not underestimate how important your own happiness and avoidance of stress is in keeping your immune system as healthy as possible. I recently went interrailing in France and Spain with my husband for a fortnight, visiting old friends. I meant to take masks for the trains, but forgot (MS brain!) and I was fine. No doubt partly because I enjoyed it so much! It is important to remember that suppression does not mean you have no immunity. It only suppresses one type of immune cell, lymphocytes, and not totally. You should be monitored to check if you are getting lymphopenia I had some problems with UTIs for a while but that has improved since I started using vaginal oestrogen. Highly recommend, in fact the doctor who prescribed said she thought all women over 40 should be using it! I would say, just be aware of side effects and keep your eyes open for them. I got a few moles checked when I was on Fingolimod because I was concerned about skin cancer. And yeah, I’m more diligent than I used to be about hand washing, and carry a hand sanitiser.
I look forward to hearing how you get on with it.
So pleased you are back, bashing blogs out on the keyboard. It is a strange form of therapy, Looking forward to further thoughts.