25 Things I’ve Learned in my 25 Years with MS

April is always a significant month for me.  It usually means time with the kids (school Easter holidays) and the perfect weather for my MS (not too cold, not too hot).  It is also the month that I was diagnosed with Multiple Sclerosis, all those years ago.  25 years, in fact.  That means that, as a 40-year-old, I was diagnosed way back when I was 15, though in hindsight my first symptoms (optic neuritis) pre-dated that.

As someone who has grown up with MS and the fact that I have lived longer with the condition than without, I have learned a few things along the way.  Here they are:

1. Life doesn’t stop

I’ve maybe had to adapt to things in a way that my friends without MS don’t need to (fewer late nights, for example), but since I have been diagnosed I have been to uni, got married, had kids and a career.

2. How to say ‘no’

As a people-pleaser, I still find this hard, but having MS has made realise the importance of putting my health first.  If I do too much, my MS suffers.  That’s not to say that I don’t do tiring things, but they are planned for and if all becomes a bit too much, I say ‘no’.

3. To enjoy the little things – MS is unpredictable

Having MS has made me realise that life is precious; we never know what is around the corner for us.  I’m grateful for the good days and my time with loved ones. I was initially diagnosed with Relapsing-Remitting MS, which got changed to ‘benign’ (no relapses for 8 years) and now it is Secondary Progressive.

4. How to ask for help

Another tricky one for me, but it has got easier over time. I’ve had to admit to myself that I am not the same as other Mums who don’t have health difficulties.  Asking for help (for example, picking the kids up from school) means that I am better able to focus on what I can do easily (e.g. helping the kids with their reading).

5. People want to help

People have offered to help with the kids, pick some shopping up for me and to give me lifts as needed.  I am so grateful and I know that I also feel good whenever I can others in any small way.

6. How much I value a tidy house!

For me, it is definitely a case of ‘tidy house, tidy mind’. I don’t have to worry about tripping on things, what it may look like if people pop by unexpectedly or have the stress of clutter.  Maybe I would have been like this even without the MS, but the need for order is definitely something that has increased as my MS has progressed.

7. That is ok to stay in bed

It’s ok to go back to bed if I am having a bad symptom day.  It wasn’t so easy when the kids were little, I’ll admit, and even now I try to do it when they are at school so I am rested for when they come back.  But I don’t feel guilty for needing to do it – it is the reality of MS. If having ‘me time’ means that I feel better physically and emotionally, it is worth it.

8. That yoga really helps me

The one exercise that I have been consistent with over my time with MS has been yoga.  When I was younger and my symptoms were few and far between, I loved running and anything that worked up a sweat.  But I still went back to yoga.  Now, as someone with mobility difficulties, I find that it helps me to stretch out, reducing pain and spasticity. The focus on breathing also helps to calm my mind. I love Yoga with Adriene on YouTube and will often adapt/simplify poses as needed.

9. That meditation helps me to deal with my emotions

I was sceptical, I have to say, but once I really got into meditation by challenging myself to do it every day, the benefits on my mental health were obvious. I felt less stressed and was better able to deal with everyday matters, such as the kids arguing. Stress really makes my MS symptoms worse, so I have found this to be a massive help.

10. That I feel better when I take care of myself

When I eat well, drink less alcohol and make the time for meditation and yoga, I feel so much better than when I don’t.  When I changed my diet to a more plant-based one, my fatigue lessened and I sleep so much better when I don’t drink. I think the idea that I am doing everything that I can to help myself keeps me mentally strong in the face of a chronic, progressive condition.

11. That people are often fighting a battle we know nothing about

Even as someone whose illness is often pretty invisible (pain, tingling and fatigue are not easily seen), it took me a while a while to realise that people are often dealing with their own stuff.  Just searching the hashtag #invisibleillness will bring up so many people on social media. Since I have been open with my health on my blog, I have found people to be more open with me, often telling me about something that they are going through that I would never have known otherwise.

12. That my children love me just as I am

As my son and daughter have said to me on numerous occasions “I love you, I just hate your MS”. I don’t blame them, I hate it too! But they don’t know me any differently and I feel like I am still a good parent, despite my illness. I am enough.

13. That my chronic illness is difficult for loved ones too

My MS means that I can’t do as much around the house as I’d like, bring in more money than I already am through my ill health pension or go out and about as often as my husband and kids might want to.  I try to remember that when things are feeling stressful at home.  My friend, whose husband has Motor Neuron Disease, said that she read The Selfish Pig’s Guide to Caring, and really, really rates it – don’t be put off by the title!

14. That the online chronic illness community is a life saver

One of the first things that I would recommend anyone who has just been diagnosed with a chronic illness such as MS to do, is to use social media (Facebook/Twitter/Instagram) to help you connect with others. They weren’t there when I was diagnosed back in 1994. Even now, I don’t have anyone locally with MS that I can swap stories with, so linking up with others like me in the chronic illness community is brilliant.  They ‘get it’ in a way that other people without chronic illnesses may not. Try chatting with others on websites such as Shift MS or the MS Society forums.

15. The healing power of nature

I am a bit of a fair-weather outdoor lover, I have to say, yet once I make myself go out, even into the garden, I feel so much better – calmer and peaceful. I’m not the only one – see Emma’s Joy in Seasons challenges, where she remarks:

It reminds us that despite all of our struggles, it can be helpful to pause, look around us, and appreciate those little seasonal moments that bring us joy. By capturing them, I believe it helps to make those moments go that little bit further

16. That it is ok not to be ok

I’m dealing with a lifelong, progressive neurological disease. It is ok not to be ok. I take Citalopram to help.

It's ok not to be ok #MS Click To Tweet

17. To be adaptable

Although my MS was pretty consistent for the first 15 years (few relapses, few symptoms), the past 10 have been more tricky. I have had to stop work due to my MS symptoms and I am less independent than I would like. BUT… I keep going. I continue to keep up with speech therapy related research in the hope that I will be able to take on some private work (even if that is only seeing one child a week) over the next year. I am writing more and enjoying the opportunity to focus on my hobbies of reading and crochet. I plan to teach myself to use my sewing machine (which I have had for over 10 years) properly!

18. To stand up for myself

The longer I have had MS, the more confident I feel in standing up for myself – for example, if I see someone parking in a disabled spot without a blue badge or to the man who said I was ‘faking being disabled’ because I hadn’t seen him in a few years and he saw me in my mobility scooter for the first time.  MS has made me stronger.

19. But to also take negative comments with a pinch of salt

Usually, people who say things just don’t understand.  I am never rude, I just take the opportunity to educate on invisible illness

20. That stopping work doesn’t mean that my brain has stopped working

For me, I had to stop working because I spent all the energy that I did have on work.  This left little for my family and for me.  Working isn’t just the 9-5 when you have a chronic illness – it is what you have to do to get yourself there, to be on the ball and do a good job and the recovery it takes after you finish.

21. That people may come and go in my life – but the important ones will stay

Chronic illness isn’t for everyone… and that’s ok. If accepting me as I am, with the limitations that I have, is too much to deal with, then I am probably better off concentrating my efforts on those friends and loved ones who can.  The truth is, people don’t truly ‘get’ chronic illness and the difficulties associated with it unless they have one themselves. I don’t ask for understanding, just acceptance of what is.

I don't ask for understanding, just acceptance of what is #MS #chronicillness Click To Tweet

22. To look for the good in every day

Yes, my legs might be crap, but I can still laugh at Alan Patridge on the telly, play with my kids, have date nights with my husband and enjoy the sun on my face. Life is good.

23. That admitting defeat is ok

It took me a long while and lots of outside support to make me realise that my working life was making me sicker. Since I have had to retire due to ill health, I have met few people online who are in the same situation and we all say the same: it was necessary for our health and we feel better for it. Life can change, and that’s ok.

24. To appreciate the changes that chronic illness may bring

No, I didn’t plan to have this life at 40 but, now I have it, I am grateful. Grateful for the friends that I have made in the chronic illness community, the fact that I am there when the kids arrive home from school and the fact that I have more time to take on new hobbies and opportunities now that I am not using all my energy at work.

25. That personal relationships are the most important thing

To love and be loved, to support others, to be kind, compassionate and empathetic. I might not be able to support others in a physical sense by helping with heavy lifting but I can certainly do the other things. I would rather be remembered for that than my MS.

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And that is it! 25 things that I have learned in my 25 years diagnosed with MS.  I should say that it is a list that I will always be adding to, I’m sure.  Is there anything that you would like to add?

Till next time