Illness vs MS

I’ve been struggling. Recently I have really been struggling. Struggling with the fact that my MS is going to make me feel like shit for the rest of my life; with understanding the concept that the Disease Modifying drugs I have to take for the rest of my life will only slim my chances of having an MS relapse by 30%; with the realisation that taking those drugs will significantly lower my immune system so I’m liable to pick up any illness going; with the fact that when I get a cough it normally lasts for 12 weeks or more and gets on my and everyone else’s proverbial tits.

That is at least a quarter of the year. 

Feeling like shit. 

This blog post is going to be predominantly, if not completely and utterly, negative and I’m not going to apologise for that. I’m allowed to feel the way that I feel about this, everyones feelings are personal to them, you can only feel what you feel. It’s probably not going to help other people who are going through this, but, I don’t know, maybe it will, because they’re probably feeling the same. Like shit.

I’m also struggling with “fairness”. How is it fair to have to take medication for the rest of your life that only reduces the chance of a relapse by 30% but it makes you feel shit anyway. I realise I’ve used the word “shit” quite a lot already but that’s because it is, quite frankly, shit. I’ll tell you what else isn’t fair, the doctors say “do more yoga, exercise more, that will benefit you”. That all sounds fair enough on paper, but when you feel like absolute shit you don’t feel like going to the gym and doing a workout, you haven’t got the energy, you can’t be expected to go to a yoga class, cough your guts up and ruin everyone else’s relaxation. That’s not fair. Now I’m not being fair to other people. That makes me feel shit too.

What makes this worse is my MS isn’t half as bad as other peoples and I’m here whinging about feeling shit. I shouldn’t be whinging. I should count myself lucky that I can still talk, I can still walk, I can still drive. But right now I am struggling, because why should I feel shit all the time to enable me to do those all things that are so second nature to us, yet still have a looming fear of the 70% chance I still have of having a relapse? I still have to cope day to day with the MS symptoms that I do have, is that not enough?

As much as it feels wrong writing a negative blog post, believe me, I do feel it necessary to admit in my blog when I’m struggling, blogging is a form of therapy for me. You need to get your thoughts out of your head otherwise you’ll have even bigger problems. You need to admit to the bad times as well as the good, let’s face it, social media is full of everyone’s good days, everyone’s best photos, no-one is going to post a selfie when you’re full of cold or you’ve just broken down in tears. But bad days, bad weeks, bad months do happen and accepting that is the goal to overcoming it.

Plus, in all honesty, it is somewhat satisfying to say the word “shit” one, two, three, four……….11 times in one blog post.

Shit, make that 12. I don’t like odd numbers. 

Fitness vs MS

I went to see my MS nurse for a check up today, she asked me how I’ve been getting on and I replied honestly; that I have good days and bad days but it is what it is. She asked me how I’ve been managing my symptoms of late, “I think a lot of it has been down to exercise” I replied. She asked me to elaborate.

I told her, under the advice of my MS consultant, who advised me last year to “practice more yoga”, he said I could do this from the comfort of my own home “I have 5 year old twin boys at home” I exclaimed…..he paused for thought…..”can you do yoga at the gym?”, so I have changed my gym contract from ‘off peak’ to ‘peak’ meaning that I can take a yoga class one evening a week and I have the most awesome yoga teacher who really knows her stuff, so that has helped massively.

I also told her I’ve got an equally awesome Personal Trainer as well, who I only see once a month but the exercises she gives me, I can take away and do either at home or at the gym on my own, she inspires me to be a fitter version of myself and if it helps me control my MS then even better. 

I’ve been exercising a lot more in general, making a conscious decision to simply just move more; getting up at work and going round to speak to someone at their desk instead of emailing or calling, walking to the doctors from my house instead of driving, parking further away from the places I’m going to so I have further to walk.

Living with an invisible illness like MS can be quite isolating, nobody can know how I’m feeling apart from me because it’s within me and doesn’t show on the outside. I can do my hair, put make up on and wear a nice outfit and will look fine to everyone else but they can’t see the pins and needles I’m experiencing 24/7 in my right hand or see the dizziness I feel in my head, the double vision in my eyes and the fog in my brain. The only thing people could see is my right leg buckling every so often when the nerve gets hit, making me look like a raging alcoholic. I’ve come to discover no matter how much I strengthen my right leg through exercise, it will still buckle because the MS attacks the nerve cell not the muscle cell so it’s ultimately out of my control. The only thing I can do is just go with it, carry on as I am and maybe, once in a while, just for the lols, walk around with a whisky bottle in my hand for added effect. (I wouldn’t drink any of it, I’ve drank whiskey once in my whole life and the result wasn’t pretty let me tell you).

At the end of the appointment, she was happy with my progress and shouldn’t need to see me until this time next year unless I experience any new symptoms or feel a relapse coming on, which is a very good sign indeed. 

So all in all, yes my MS is a constant battle.

But it looks like it’s a battle I’m winning.

Mind vs MS

I find the process of writing a blog very therapeutic, staying positive about my diagnosis by renaming my MS to stand for Mental Strength. I have had positive days, albeit very few and far between, but I’ve had more days where I have felt lower than I could ever have possibly imagined. I started to let MS beat me and define who I was. I couldn’t see any good qualities in me anymore as I was always so down; I only noticed the negatives about me and about how my MS was making me feel, I didn’t have Mental Strength at all. I was diagnosed with a mild form of ‘Relapsing Remitting MS’ in the beginning but as time went on and my symptoms never went away completely, the doctors informed me it was not as mild as they first thought. I started thinking about when I used to get dizzy spells 10-15 years ago that would cause me to stop whatever I was doing and hold onto something until it passed. I started thinking maybe I have had this lot longer than I’ve been diagnosed for. I read up about my diagnosis in more detail and there it was, in black and white on the screen in front of me. Something that I had never been told by the specialists but I assumed would apply to me in the future:

“Most people with relapsing remitting MS will eventually develop secondary progressive MS”.

For somebody who suffers with crippling anxiety, it started getting me down so much that I would wake every morning wondering whether my symptoms would be worse today or if I was having a relapse. I would randomly start crying for no apparent reason throughout the day; reading the kids a bedtime story, even at work, in the toilets or on my lunchbreak. Then I emailed Emma one day and asked if I could write another blog post to try and channel my thoughts onto paper to see if that lifted me, there’s something about getting your thoughts out of your head somehow, whether it be writing them down or talking to someone, that seems to work. If I start writing down how I feel I seem to find a solution that my head just wouldn’t think of if I was just thinking in my head, I need to think outside of my head….if that makes any sense at all!!

So what I have discovered by “thinking outside of my head” is this: Yes I will have an incurable disease that could deteriorate for the rest of my life but I have to think of the reasons why I’m grateful for having MS. Looking at the positives of having MS. It has made me a whole lot healthier and fitter in terms of diet and exercise (addiction to chocolate aside), which in turn, has made me stronger physically (despite the MS attacking my nervous system and giving me numbness, dizziness and vision problems), which makes me feel as if I’m fighting back. I’ve met some lovely people through forums and friends of friends who act as a support network and help you realise you’re not alone in the MS world. And, now this is an odd one, in a roundabout way it has actually made me more feminine. I’m a tomboy at heart, always have been always will be, growing up playing football with the boys (and fellow tomboys) when I was younger, but now I’m exercising more, my worst feature, which has always been my legs, has now become a favourite feature of mine which has resulted in me buying (sorry bank balance) and wearing more dresses.

The advice I have taken on board the most is that you can’t change what life throws at you but you can change your response to it. I didn’t want MS but MS chose me so I have to learn to live the life I have now the best I can possibly make it, so if I do relapse or deteriorate I can hold my head up high and know that I have lived each and every day to the best of my ability. MS has taken the person I used to be and made me a stronger and braver person and I can only appreciate that.

I’ve made it this far, I won’t give up on myself now.

*written 18th August 2017 for Old Town Hypnotherapy

Me vs MS

I had been ill for some time early in 2016; dizziness, numbness and pins and needles down one side of my body and from the time my symptoms started, being signed off work and waiting to see a specialist, I did the normal thing of someone who battles with anxiety and googled my symptoms. Google is a wonderful thing* (*ahh sarcasm), you become your own doctor and try to diagnose yourself, we all do it, don’t deny it my friends. But in this situation, I’d already diagnosed myself with MS before I’d had the four, rather delightful* MRI scans (*ahh sarcasm again, we really must stop meeting like this), before I’d seen my specialist, who then diagnosed me with MS. I thought that after I’d already diagnosed myself it wouldn’t come as a surprise and just assumed I’d already come to terms with it. It didn’t come as a surprise no, the surprise came in that I had been, in fact, right all along.

I thought I’d be ok, as I’d already convinced myself I had MS, but the surprise at knowing I’d been right the whole time following my self Google diagnosis, was enough to bring me to tears once I’d left the hospital, after all, I had just been told I have, and would have to live with, a disease that is currently incurable. After my little cry, I soon started thinking positively, which for me, is a rarity. The type of MS I had been diagnosed with was called Relapsing Remitting MS, meaning my symptoms would either fade away completely, or in my case only partially, but would be prone to relapses. This, as opposed to the progressive forms of MS where symptoms get worse as time goes by, was a plus in my eyes. It’s the learning to live with the symptoms that I have and the uncertainty as to when, or if, a relapse will strike that I struggle with. But I’ve tried to keep my positive head on (another struggle of mine) and decided to just simply accept that I have an incurable disease, I can’t do anything to make this go away completely, all I can do is read up on how to alleviate my symptoms; exercise, eat well, take certain vitamins, rest when my symptoms are bad – in short, take care of myself. In reality, it’s actually made me a healthier person. Another thing I did early on, which I’ve said I would do from the start is to OWN IT! Not let MS own me. So I thought for a minute, that’s literally all it took – a minute – and decided to rename it. And that’s what I’ve done. I don’t suffer with MS. I have MS. And MS, to me, is Mental Strength. That’s what I have. I have Mental Strength. And I’m proud of it.

Overcoming my diagnosis is an ongoing part of my new life but I’ve learned a lot about myself in the process and realised how strong I am as a person, maybe not physically but mentally and that’s what counts. I’ve also learnt to appreciate the life I have, you can’t change what cannot be changed but you can change your outlook. You can change how you react to it. I used to be a person who worried about the future and what could happen, but this has taught me to take every day as it comes.

It’s the acceptance that’s made the difference. So I feel dizzy from time to time, I’m learning to live with it. I have pins and needles in my right hand constantly, they’ve become part of me. My right leg gets numb sometimes and gives way without warning, it makes me walk with a gangster limp! It’s all good! I have to put my own positive spin on it.

I’ve got Mental Strength after all and Mental Strength can get you through anything.

*written 20th December 2016 for Old Town Hypnotherapy.