Friday Feelings – Honest Thoughts

Honest Thoughts About Relief, Jealousy and Anger

It’s kind of strange to feel that you’re an ‘old hat’ at chronic illness – but that’s what I am.

2021 marks the 30^th year since I had my first MS relapse, optic neuritis, aged 13 years old. I wasn’t diagnosed until two years later but still… that means I’ve been living with MS symptoms for 30 years!

Sometimes when I’m looking on my social media channels, I’m struck by the sheer number of people sharing their experience of having MS who are looking for help and support and sharing with others about their lives living with MS. I love the fact that I can now interact with people with MS that I can learn from, chat to and just share experiences with. This wasn’t available to me back in 1995 when I was diagnosed and, my goodness, it’s so clear to me now how much these platforms act as a lifeline for people living with the illness (and so many other chronic diseases).

Some Background

Multiple sclerosis typically strikes when people are in the 20s and 30s (according to the NHS) and the majority of those are diagnosed with the relapsing-remitting type. This means that those diagnosed are usually taking some form of a disease-modifying drug (DMD) and will remain on those treatments until they potentially move into secondary progressive MS (which isn’t given, it is important to mention). As such, the majority of people that I see on social media with MS have their own unique challenges of dealing with medications and their side-effects or worrying about when another relapse might rear its ugly head. I remember that worry and uncertainty so much, the way that my stomach would drop when I recognised the tell-tale sign of a relapse. But, for me, this was many, many years ago… and even then I didn’t have the challenges of treatments, as I wasn’t on any! Back when I had a relapsing-remitting MS, the doctors took my outside ‘wellness’ as a good sign – even labelling me as having ‘benign’ MS (they didn’t think to do any MRIs). I know now that there is no such thing and that the damage was happening inside my brain, subsequently transitioning me to secondary progressive MS.

Being Honest About my Feelings

It’s hard for me to articulate, but sometimes when I see other MSers going through the trials and tribulations of different medications, I’m aware of a whole mix of emotions going through me. Relief because I didn’t have to put myself through that but also maybe a bit of anger and jealousy? Anger because I often think about how my MS could have potentially turned out differently if the doctor just bloody well put me onto a DMD as soon as I was diagnosed! I don’t know whether they decided not to because of my young age at diagnosis, because the treatments themselves were in their infancy or because the criteria for treatment changed over time. I’m guessing maybe all three. But anger is truly one of those emotions that I have to try to accept and deal with.

The emotion jealousy isn’t quite so black and white for me. I don’t even know if it’s the right word, because I wouldn’t wish MS (whether relapsing-remitting or progressive) on anyone. The variation and unpredictability are just two of the things that make it very hard to live with. But, when I see others my age or older with MS still being able to do the things that I want to do, the green-eyed monster can’t help but make an appearance. I even get jealous of myself when I look back at old pictures and videos.  I saw a video recently of me climbing in a children’s soft play area with my son, who was five at the time. My daughter, when seeing it, gasped and said, “is that you mum? You can walk!” I’m so frustrated that the person that they see now is not the person that I used to be or the person I still want to be able to be.

Reflections

I know, when I really think about it, that I’m looking back at previous ‘MS Jen’ with rose-tinted spectacles of course. I know that whilst climbing in soft play on that video, I was struggling at work due to my symptoms and dealing with fatigue every day. Nothing is easy about MS and, like everything in life, it’s been in constant change. I like to think that my body, with its ‘relatively young age but old disease’ means that I’m just getting more and more knowledgeable about my body, what it needs and what it doesn’t need. And I mean that in terms of what I need physically and mentally.

I feel like I can truly say that having MS has made me an extremely strong individual– okay, obviously not physically, but mentally– and I don’t think that I would have been this way had I been diagnosed with MS more recently?  In that way, for me, MS has been both a blessing and a curse… and I have only just recognised the blessings in the last few years!

As regular readers will know, I spend time every day now trying to meditate to help deal with my emotions. Meditation is very much about not trying to ignore or change feelings and emotions but to accept them and to try and make them ‘wash over’ you. I wouldn’t say that I can do that perfectly yet, but I’m trying! Journalling has also helped me with that as do even simple breathing techniques that I try and use when situations crop up that I’m struggling to handle. So I think that’s the key for me – just trying continually to accept how I am now and giving thanks that I’m still going – managing to keep the house vaguely clean and the kids fed and watered –  despite it being 30 years since my first relapse!

I want to mention, having read all this back, that I wish everyone living with MS love and health.  I don’t want to diminish anything that you are going through with your own MS, everyone’s health and experiences with MS are so varied and unpredictable and I know that it is shit for everyone, no matter where you are in your ‘MS journey’.  This is just an honest reflection on how I sometimes feel.

Anyway, I’ve written this on a Thursday, thinking that I could entitle it ‘Thinking Thursday’ but it’s now 11:20pm and I should be in bed. I think I should post it tomorrow and then title it Friday feelings instead. 😉

Sending you all love and light, stay safe everyone

Thoughts About Being an MS Blogger (with Advanced MS)