Positive Aspects to Having MS?!

Sitting inside on a very hot day, knowing that tomorrow is going to be even hotter (37 to 40°!) has made me reflect on just how much my life has changed since my chronic illness symptoms started playing up.

Although I knew that heat intolerance (also known as Uhthoff’s phenomenon) was a common symptom for those who have multiple sclerosis, it didn’t really affect me until about seven years ago. Now, as soon as the temperature has risen above 24°, my fatigue levels increase and my walking abilities plummet. Typical, because I actually used to love the heat and the sunshine! Now, you’re more likely to find me sitting in a room with the blinds closed, a fan on and a can of cooling spray in my hand when the heat just gets a bit too much.

My blog chronicles just how much my life has changed over the past 8 or so years. Although I’ve had MS since I was a teenager, the big changes are much more recent: marriage separation, losing the ability to be spontaneous, using mobility aids, changing work practices… if I think about it too long it’s easy to get lost in negative thoughts around my chronic illness and the impact it has had on my life.

But wait; MS has also provided me with some life changes that can be viewed positively. Sometimes, standing back and thinking about the good things that have come as a result of my MS diagnosis and symptoms can help me to keep the glass-half-full attitude that I had growing up.

Positive Aspect of my MS: Friendships

I’ve heard a saying,

‘those that mind don’t matter and those that matter don’t mind’

I think that’s definitely true for those living with chronic illness(es). Lack of spontaneity and the need to cancel plans can be frustrating, not just for me but also for the people I had made plans with. But my good friends and family understand. They still invite me to things that I may not be able to get to. They often make sure that venues are accessible for me and take my needs into account.

When I was younger, I had a lot of ‘acquaintances’ that I would see only on a night out rather than true friends; now, I’d rather have a few friends that I can rely on rather than a big group of potentially undependable acquaintances.

Of course, I can’t write about friendships without mentioning the virtual friends I have made as a result of my diagnosis. The online community for people with MS/ disability/ chronic illness is irreplaceable to me; I live in a place where I don’t know many people with health difficulties. Knowing that others understand, even if they live a long way away, is invaluable.

Positive Aspect of my MS: Work

2022 marks my third year since having to leave the NHS due to my MS and its symptoms. Now I’m working from my home, still doing the same job but over fewer hours and days.  Although it was highly emotional having to stop my work, I knew it was time due to the energy it was using up in my week and the impact it was having on my home life.

Now I have a much better balance between work and home, for instance, I’m there when the kids arrive back from school. I also don’t have the pressure of using my precious energy to see more clients or fill in more paperwork than I officially need to and I usually have the energy for other interests, such as reading.

Changing my work practices also means that I have the time to take part in MS advocacy work. I can see that, even though I may struggle to continue speech therapy in the future, my MS has given me a specific skill to be able to help people in other ways, whether that’s by raising awareness of MS or providing my expertise as a person living with the condition.

I doubt that I would be writing if it weren’t for this blog about MS; though now I am, I really enjoy it and would love to branch out.

Positive Aspect of my MS: Taking Care of Myself

Nothing makes you sit up and pay attention to your body more than a diagnosis and/or new and troubling symptoms. In my case, I was diagnosed in the 90s when there wasn’t easy to access information online to help manage chronic illness as there is now.  As such, it was an increase in symptoms that make me want to be as well as I could be with my MS.

I was always an exerciser; I ran and I can imagine that if I was able to now I would love heart-pumping exercises like spin classes or HIIT. As it is, gentle yoga, chair-based exercise and The MS Gym are the things I go to now if energy allows.

Watch: My YouTube Playlist of Videos I Use for my MS

I reckon the biggest change that has occurred as a result of my MS is what I eat; I started following the Overcoming MS (OMS) program back in 2014.  I know that I was panicking about the sudden progression of my MS symptoms and I hoped that following OMS would stop it in its tracks. It didn’t, as far as I know. But, then again, how would I know? MS is unpredictable and, even though I have progressed, how do I know that I wouldn’t have even more symptoms if I hadn’t adopted the OMS diet? Nowadays, I am more flexible in regards to what I eat, especially if I am at a restaurant or with friends, but I do tend to stick to dairy-free, meat-free and low-fat.  I can guarantee that if my MS symptoms had not surfaced, I’d still have a diet with lots of cheese, pizza and chocolate!

Meditation and vitamin D are also things that I don’t think I would have considered if it weren’t for my MS; now they are a regular part of my ‘staying as well as I can with MS’ routine.  I now know that Vit D is a great thing for everyone to take, not just MSers. The same goes for practising meditation.  But would I, if I didn’t have MS?  I’m not sure.

Positive Aspect of my MS: Not Putting Up with S?!T

I don’t know if it’s an age thing, that I’m getting more confident or both, but I’m finding it easier and easier to stand up for what I need and what I believe in, as my MS progresses. This doesn’t just relate to disability awareness but also to the needs of people often marginalised in our society.

In regards to my disability, I can get frustrated easily both at home and when out – which is sometimes to my detriment.  However, at other times it means that I make it clear that disabled people expect the same level of courtesy and access as someone who is able-bodied.

The specific scenarios I’m thinking of are 1) if I can’t get parked because the blue badge spot has been taken by someone without a badge (I will leave a note) 2) being called ‘Wheelchair’ whilst going through customs at an airport and 3) someone speaking to my companion rather than to me (‘what’s wrong with her?’ when I was sitting right there on my mobility scooter).  There’re so many wrong things with that, by the way; first of all, my health condition is no one’s business and secondly, I am able to speak for myself, thank you very much.

Experiencing these difficult situations means that my level of confidence has increased in a way that I’m not sure it would have, had I not had MS. I like to think that I would have advocated and stood up for the things I believed in even if I didn’t have MS, but I suppose I’ll never know. I hope that by standing up for myself and for others now, I’m modelling to my children the importance of doing the same.

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It’s so easy to focus on the negative things about both experiencing and living with a chronic illness; I like to think that, by writing down the positives, it will give me some peace around something that I’m not able to change. Have you managed to find any positives in relation to living with your chronic illness? I would love to hear if so.

Till next time,