History vs MS

This one is probably the hardest, most courageous blog post I’ve had to and will ever have to write, but it is one that I feel necessary for my wellbeing and mental health to share. I’ve found blogging an incredible outlet since the boys were born, from my NotWhatItSaysOnTheTwin blog to my MS Warrior blog, it’s helped get me through some mentally tough times. And this post is one that, once again, I have to thank my MS for giving me the courage to share because MS has changed my life in both good and bad ways. The bad ways speak for themselves, I don’t need to go there. The good ways are not only the health and fitness benefits, MS has also changed my mindset and perspective of life, it has helped me realise the ways in which I have not been living and this, here, is the main reason:

20 years ago this month, when I was 16 years old, I was sexually assaulted on the living room floor of my family home by an apparent “friend” of the family. At the time I did nothing about it, I was a shy 16 year old tomboy, I was shocked, embarrassed and scared; terrified of what would happen if I told anyone and I naively thought I was protecting everyone else’s feelings by keeping quiet. A decision that remains the only regret of my life to date. I kept quiet for the 5 years that followed, until I was 21 and I couldn’t keep it to myself any longer, so I wrote a letter to a friend of mine who I told to read and then burn. From then on, I’ve told a few people, my mum, a few boyfriends including the man I married and subsequently separated from, then my dad, stepmum, brother and a couple of work colleagues only recently, and I have spoken to the police about it on a couple of separate occasions; once back when I was 21 and again in the past year or so, but it was never enough. The anxiety, the guilt from not reporting it at the time and the fear deep inside me has never left and I have let it ruin my life for all that time.

For a long time afterwards I felt bitterness towards everyone, including myself. I never once blamed myself or felt ashamed, I knew I didn’t do anything wrong. But I was bitter that I’d been too afraid and weak to fight back and I felt bitter that no one noticed what was going on. I felt bitter towards everyone but the one person I should feel bitterness toward: him. He just made me feel numb. Not like the MS, not physically, but emotionally numb which I think is even worse. I didn’t feel anger, hatred or any emotion towards him, I was angry and full of hate for myself but to him, I felt absolutely nothing, like he’d killed any emotion I should feel towards him.

This year has been quite difficult for me and I think deep down it’s because of the fact that it has now been 20 years and I’m still letting it affect me. 20 years for fuck’s sake, more than half my life, what a waste of 20 whole years of my very existence. I’m annoyed at myself for letting it shape the person I am, in terms of my anxiety, I’m always worrying about the what ifs and what could happen, instead of living in the present moment. That is the sole reason for my anxiety and I think I will have to live with anxiety for the rest of my life, hand in hand with my MS.

They say everything happens for a reason. But what reason would there be for that to happen to me? At 16? In my own home? What reason would there be for that to happen to anyone? At any age? Anywhere?

It’s hard not to think how different I would be if I’d found the courage to speak up at the time and report the assault and get some kind of self fulfilling justice, whatever that looks like. Would I be more self-confident instead of having absolutely no confidence? Would I not have the trust issues I have? Would I be less of a worrier? Would I not have this crippling anxiety that grips me so tight? I guess it could’ve been worse, it could have so easily turned me into a horrible person but luckily it hasn’t, I’m probably the kind hearted, thoughtful, empathetic soul I am today because of what happened to me 20 years ago so I have to be grateful for that. But I refuse to keep letting it get me down and stopping me from living my life. I’m sick, tired and emotionally drained from not being kind to myself for all these years.

So I’ve made a decision; the tears that are streaming down my face as I write these words in this very moment, are the last I’m ever going to shed over what he did to me. I’m going to focus on learning to live in the present not the past, to love myself without an ounce of hatred and to live my life and enjoy every last second of it.

And please, not just on World Mental Health Day but every day of every year for the rest of your lives, don’t let any bad experience stop you from living yours.

Fundraising vs MS

Three years ago today I was diagnosed with Relapsing Remitting Multiple Sclerosis. I have been arranging a fundraising event to raise money for a local charity that helps people with various neurological conditions including MS. This time next week, at DW Fitness First, my fellow gym members and I will be taking on an 8 hour Spinathon – back to back spin classes to raise money for The Swindon Therapy Centre for MS. 

In the past 3 years, I have taken my diagnosis and used it to change my diet and exercise regime and found that I can manage my symptoms through both of those, along with a heap of mental strength. Don’t get me wrong, my MS gets me down; I suffer on a daily basis with dizziness, numbness, constant pins and needles, vision problems, mood swings, fatigue, the occasional leg collapse (which has been happening more regularly recently, due to stress in various aspects of my life), the side effects of my medication and an overwhelming sense of dread as MS is so unpredictable from day to day, but I am still able to do things that a lot of people with the more progressive forms of MS can’t. I’ve been to the Therapy Centre a few times and realise I’m very lucky to be able to manage my symptoms myself. A lot of people who use the Centre rely on it to help them through their journey and it feels like a safe haven in such an unpredictable world.

The best thing I have read about living with something like MS is to “be as well as possible, for as long as possible”, so I wanted to do something whilst I am able to; to raise money for a Centre that helps people who have limited abilities because of a condition they didn’t ask for, but one that chose them and changed their lives.

I have to carry this illness for the rest of my life, so I can either wallow in the weight of that, or I can fight every day and make it a good one.

All we can do is always maintain hope and never give up.

Visibility vs MS

First let me start by wishing you all a HAPPY WORLD MS DAY!! MS is an invisible disease, the amount of times people say “you look fine, there’s nothing wrong with you” or “but you don’t look ill” to sufferers of MS, can make them feel lower than they already do. For me personally, only one person has ever said the latter to me and it’s just gone over my head like all ignorant comments should. I wake up everyday greeted by the constant pins and needles in my right hand and foot like a daily reminder “hey, good morning, remember you have MS!” Every so often the Optic Neuritis will hit me, and impair my vision, I find myself having to cup my hands over my eyes until it passes. Sometimes my right leg will give way and I’ll stumble, unless I’ve got my trusty “I have MS” sign on my head, I just look drunk, without the fun of swigging a pina colada or four. Then there’s the dizziness; sort of like the feeling you get when you stand up too quick but all the time. The fatigue; a feeling of having a good nights sleep and waking up like you’ve not slept in years. The constant worry of how you’re going to feel each morning or the fear that when you receive the results of the latest MRI scan (which, let me tell you, is the EXACT OPPOSITE of a nice lie down for some peace and quiet), you’ll find the words “new lesions”.

What I have come to realise, throughout the past 3 years since my symptoms joined me for the ride that we call life, is that the biggest part of living with MS is ACCEPTANCE. I can’t change my diagnosis; what I can change is my outlook on the diagnosis, I can adapt the way I do things and accept I may have to do things differently. I decided to be healthier through diet and fitter through exercise, so in that respect I am grateful to my MS and have accepted that it is part of me and will be until, if ever, a cure is found. I have accepted that it is, ultimately, out of my hands. 

I’m classed as having a “disability” but I don’t look disabled; so what’s invisible is almost secondary. At the end of the day I can still smile, I can still laugh and I can still strive to be happiest version of the new me, with my new normal. 

And that, in my mind, will always be visible.

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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.