Invincibility to Inability


Eighteen months ago, I felt invincible.

Eighteen months later, I despise my body. And I despise myself.


I’ve never been a writer, just a thinker. I just hope to actually put something down in writing will help me deal with this point in my life where I feel lost and all the emotions which accompany it. However, I guess like many people who write about a difficult subject or situation they have had to endure in their lives, I don’t really know where to start.

My life at the moment is a mess.

That sounds dramatic, I know, but that is how I see things right now. There are many reasons for why I feel this way. I won’t go into all of them (I don’t have the time or the energy right now) but I will touch on one of the main sources of pain, confusion, anger, upset and turmoil  – my health.

For those of you reading this who don’t know me, I was diagnosed with Multiple Sclerosis (MS) ten years ago when I was fifteen years old. MS is a chronic, unpredictable disease of the central nervous system where the insulating covers of nerve cells are damaged by the immune system and, at present, it has no cure. I would describe my overall ‘journey’ with MS as rocky but, up until around eighteen months ago, the best word I could use to describe it would be ‘manageable’. Perhaps one day I will go into more detail on my life with MS but for starters, I will focus on the last four years.

In 2011, a year after beginning on a new disease-modifying treatment for my MS, I decided to take up distance running to raise money for charity. I recall one, probably dark, probably cold, day in January registering for the Inverness Half-Marathon which I aimed to run in the March, which I hoped would be followed by the Loch Ness Marathon in the October. I had thought about it for months and months but didn’t know if I could ‘do it’ and kept convincing myself it was unrealistic. I guess now, I had to find out for myself. Place registered, fundraising began. There was no turning back…

When I was younger I despised any sort of distance running (and I referred to distance running as anything over 200 metres, by the way) which during cross-country running season made for several long resentment-filled weeks. Little did I know, that beginning something I previously despised as a youngster would put me on a path to some of the best, most fulfilling, experiences of my life.


image-1
2nd October 2011

The 2nd of October 2011 will, until I get married (if I ever do…) or have a child (if I ever do…), be the biggest day of my life. On that day, I completed my second running event for MS Society Scotland, completing a marathon seven years to the month of my MS diagnosis. I didn’t need to fear this disease anymore. I was in control.

Since that day in October 2011, I have went on to complete three more running events for MS Society Scotland despite several lengthy absences. An operation (for non-MS related reasons) in May 2013 affected my running for several months. However, when I returned to running in the summer of 2013 I have never felt better, both physically and mentally. I again, felt firmly in control. During October 2013, I completed my fourth and fifth events for MS Society and loved every second. I felt good about myself for the first time in my life. I almost (and I never do) felt proud of myself.

I felt invincible.

My running felt far ‘easier’ and far more enjoyable in 2013 than it did in 2011. After recovering from my operation, I resumed running in July, starting from a very low base of fitness  but managed to build up to training, on average, four times a week. I say training, but I knew there were no events coming up that I would be ready to take part in as they generally cease from October to early spring time. However, I still enjoyed being back out there and being able to take a responsibility for my own wellbeing.

Every Sunday morning, after pumping my body full of a winning pre-run combination of porridge, golden syrup and blueberries I would set off on a long, slow distance run. Breakfast consumed, ‘CamelBak’ on my shoulders, I would off I went to pound the streets for a few hours. It became a routine. A hobby. An undoubted passion which I became, for the first time since beginning running, something I could do to shut myself off from any negativity going on in my life. I was inspired by myself.


9th November, 2013.


For those two autumnal months it clicked into my head that I was doing something that, with a fluctuating condition like MS, many unfortunately are unable to do. I wanted to push myself even further than I had during my marathon adventure in 2011 and, during running, I was planning my running goals for the following year once I had recovered from another, forthcoming operation which was coming up in January. However, unfortunately, and unexpectedly, one day in November 2013 would see the start of a rapid decline in my physical health, and as a result, my mental health.

Since that day in November 2013 where, at my work, without physically exerting myself, I experienced chest pains coupled with a shortness of breath. My diagnosis ranged from costochronditis to pleurisy until there didn’t seem to be a diagnosis in the end. The mystery illness affected my eating habits, with it constantly feeling like I had food trapped in my throat, my stomach, or somewhere in between. This has been the trigger for a cascade of different symptoms in various areas instigating a swift depreciation from the ‘healthiest’ I have felt in my life, to complete physical and mental anguish and disheartenment.

I am not going to use this post to ‘have a go’ at some of the doctors and some people within the hospitals whom I have come across in the past year and a half even though I certainly have enough ammunition to do so. Generally speaking, the only advice I get from my GP is anti-depressant medication (which have had no positive impact) as, in his eyes, I am “looking to find anything that’s wrong with (me) to take (my) mind off having MS”. A magnitude of physical symptoms continue to be unresolved, and meanwhile I feel like a ping-pong ball being batted back-and-forth between team ‘MS related’ and certain other medical professionals who play a role in team ‘not MS related’. The plethora of symptoms I have had, and continue to have, have culminated in symptoms which fill me with fear and trepidation – problems with my legs.

I appreciate with MS, this could be ‘the nature of the beast’. However, this is not something I am able to accept right now and probably never will. I cannot imagine anyone would be able to. Also, as I said, I am continually given excerpts from some doctors saying that what is going on at present is ‘not MS related’ which, that phrase in itself, makes me think that it could be temporary, be brief, be fixable. However, I never get an answer of what it is that is causing these feelings which, unfortunately, makes me think it is. As I type this, along with the hip pain and the back pain, my legs feel like two long lumps of lead with an aching heaviness with every step I take and also when I sit or lie down. I used to get this sort of feeling after running and I knew I would likely recover in a few days. To get my head around feeling this way without being able to exercise is proving so incredibly difficult. So far, I have spent money on physiotherapy sessions, osteopathic sessions and Hyperbaric Oxygen Therapy sessions to try and improve my health but, sadly, all have had very little positive impact.

In terms of my mental health, I do not deny that I have depression. I also do not deny that it is at a very high level. I know that there are several complex reasons as to why I feel this way but I know that my health is up there standing at the top of the ‘podium of woe’, in first position.

Three weeks ago, was the time where I truly realised the depths of my depression and how far I have fallen in the past months. While at a hospital appointment, a doctor said to me : “What gives you pleasure in life, Stuart?“. I  was dazed, unable to think of a response. My head was completely blank. I sat frozen for around fifteen seconds trying to think of an answer. Nothing came. I looked back at the doctor and muttered, “I think that says it all“. I walked out the hospital and headed to work with a tear-filled bus journey sandwiched in between. That, for me, was when the depths of my despair hit me. I had always thought for a long time before then that things were ‘pretty shit’ but I had never been forced to sit and think about it and come up with something positive in my life. When I stared blankly at the doctor, I knew that was it.



I can not recall ever feeling as low as I do right now. I try to emphasise to people that this stems from my poor physical health and my resulting inability to exercise. I can not recommend some form of exercise highly enough if this is a viable option. I realise now the incredible gains I acquired from regular exercise and the resulting, much-needed, boost in self-esteem. Running simply made me feel good about myself. It made me feel like I had some form of control over what was going on in my life. It gave me hope.

Now eighteen months later I despise everything about myself. I have a deep-rooted anger inside of me which I cannot seem to relieve. An anger at the abandonment of the medical professionals who are meant to assist me but, if anything, have been in the driving seat as I have hurtled towards this dark, dead-end I find myself in. I have lost a sense of purpose. I’m permanently uneasy. I’m never content. Everything feels like a chore.  I’ve, as you could say, ‘lost my mojo’. 

Despite living with an unpredictable disease, I never could have predicted such a swift decline in my health. I am struggling to deal with the sadness, the crushing melancholy that I may never experience the emotion and euphoria of completing a running event again. That is, amongst other things, something I cannot accept. Perhaps that is a ‘character flaw’, perhaps that is an understandable reaction to the hand I have been dealt. You decide.

One thing I do know is every single day I think and I dream of experiencing these highs again. With MS, and its fluctuating nature, who knows if that is achievable. I could have ran my last mile. I could have many more miles left in my legs. I just hope I can go to where I want to be. A place where I can be happy.


Eighteen months ago, I felt invincible.

Eighteen months later, all I want is to be understood, to be helped and to be content.


http://www.justgiving.com/stuartrose89

26 thoughts on “Invincibility to Inability”

  1. Pingback: That day – Stu
  2. Hello Stuart. When i was reading this article, in many ways i saw myself. I have some strange demyelinating disease, like MS but different in some details. My first health problems appeared about 21 years ago, at age 9. I also felt the wild fatigue in my legs, and I had already spent a lot of time in a wheelchair (about 7-8 years). My thoughts are often indistinct and not collected, I began to learn English, because I quite often forget the simplest words on Russian langueage and have to look for ridiculous analogues forever. A couple of times I even fainted: DDD
    Nevertheless, from the very childhood I have been constantly looking for various methods of treatment of multiple sclerosis (demyelination) and test them on myself. A lot of the techniques that I have tried are pretty alternative. Conservative medicine is not able to restore the brain at this moment. All the results I publish on my blog – http://www.happybai-eng.com . Have a look if you are interested. Thanks.

    Liked by 1 person

  3. Pingback: Open | Stu
  4. I know exactly how you feel. I was a marathon runner my entire life and now can not work or run anymore. I don’t know who I am supposed to be more. Shuffled from one doctor to another all telling me my symptoms are “just MS” and my neurologist telling me they’re not typical MS symptoms and none of them caring enough to do anything about any of them, extremely frustrating. Email me any time, I’m Scottish by background but understand just what you’re going through. I was diagnosed in 2006!

    Liked by 1 person

  5. Stuart, you are an inspiration in the way you have dealt head on with your diagnosis. My partner has MS and is 15 years post diagnosis I have watched her at her worst but she has an inner strength that keeps fighting back, through a really bad relapse she had to learn to walk again but has went from needing her wheelchair to walking again. She has a saying about MS ” I have MS but it doesn’t have me”. She is also a great believer in maintaining her body health in every way possible.
    Keep strong and keep fighting against this x

    Liked by 1 person

  6. Stu, I read your story and found myself moved to reply in the vain attempt to help you in some smell way.

    May I whole heartedly recommend the book Listen to Your Body by Bisong Guo, it’s an easy yet profound read for anyone that wants to take control of their health both physically and mentally.

    I too understand your simmering anger having drawn continual blanks with Western Medicine. I have found Eastern Medicine much more geared towards chronic diseases and massively helpful in their management.

    Dr Guo is actually based in Forres at a place called the Shen Foundation, you can find them off you Google ‘classical Chinese medicine.’ There are also Medical Qigong classes based at the Riverdale Centre on Church St in Inverness. I’ve been and can also recommend these. It takes a leap of openness and might not be for you right now but then again it might well be.

    I wish you very well and hope that if you do choose this route, that it’s as strong a basis for healing as it has been for my digestion.

    Liked by 1 person

  7. Stuart,

    What amazing words! (I got introduced to your blog from the Facebook Tecfidera site).You have managed to very accurately word how I feel many days! I was diagnosed May 2014, and it has been a HUGE change in life! There are so many days the depression wins (not a problem I had before MS) and I truly miss the old me.

    You are so very inspiring with all you have accomplished and done in your life! I am so sorry you are struggling for an accurate diagnosis on your new symptoms (and not everything is MS), I truly hope you are able to find a resolution and appropriate treatment very soon! I truly pray for you to have more brighter and positive days filled with happiness and contentment.

    If you ever need someone to talk to, I am only an email away. Wishing you much happiness. Big hugs!

    Mitzi

    Liked by 1 person

  8. Stu, although we haven’t met (yet) I regard you as a friend, kindred spirit & above all an INSPIRATION. I’ve noticed through your recent tweets you’ve been knocked back a peg, but I truly believe you’ll ride out this dip. You’ve got youth, and the stubborn determination us with MS need, on your side. I can see that in your writing. Keep sharing your thoughts, better out than in. Above all, keep strong.
    Steven @tyniedevil

    Liked by 1 person

  9. I am at about 15 years post DX now. I, too, was a distance runner and suffered severe angst when I couldn’t do it any longer and realized I’d been using running as a panacea for mental and physical relief. When I couldn’t do it I had to find something else. I wish you well man, good luck!

    Liked by 1 person

  10. Im dx with MS and have been on the roller coaster ride too, emotionally and physically. Not sure if you’re a reader but here are two books I found helpful on navigating the emotional ….I’m in Canada so hope they are available in Scotland…

    MS and Your Feelings, by Allison Shadday

    Full Catastrophe Living, by Jon Kabat-Zinn

    Hugs from Winnipeg, Canada

    Karen

    Liked by 1 person

  11. Stuart,
    You shared the feelings that you have. Trust me, the truth of your feelings IS important. I can’t say I know exactly how you feel because I don’t. I DO know that this disease makes life a challenge everyday. As for if it is MS or not and the questions you have, they are important. I know my neuro was the second opinion for me. He has earned my trust because all the questions I had he was honest and said there is so much they don’t know. I know there are so many symptoms. I don’t like to put everything on MS. There are things that can happen with MS but could also be caused by something else. My neuro is sure mine is MS but there are still times where issues can be from another problem.

    I do pray that you can find joy and happiness. There are times it is difficult. I hope you know that you are cared about and there are others that hope to support you in this junk that we battle. I do my best to “choose” to be happy but there are days that are more difficult to reach that goal than others.

    If it weren’t for Jesus in my life, I don’t think I’d have made it this far.

    Keep hanging in there and let out how you feel. It is important to let it out.
    Shelly

    Liked by 1 person

  12. I can so identify!I had my own successful 6 char beauty salon with botique in back, played softball on a league, sang in a group that had a prison ministry for 8 years, had 2 children at home,one in 8th grade other in high school, married & had energy to burn! Some of same health issues as you described. Chest pain, pain in legs & arms, swallowing issues, kidney issues, back pain. I know you didn’t mention all of these but my problem ended up being immune related! I was diagnosed after about 4-5 years with theses issues & more with Fibromyalgia. Thought you might want to look into this. Hope it isn’t but couldn’t help sharing. The sooner they can find put the better the outcome. My family members have been diagnosed quickly because of me & they are doing great because of early diagnosis! Wanted you to know of this just in case it might help. I lost everything because of this & want you to do better as soon as possible. Hope this is of help! Praying for a return if health for you! God bless you in what you have accomplished & what you will continue to accomplish!

    Liked by 1 person

  13. This condition is brutal, I found it very difficult to accept the ‘new’ me. I didn’t like her and wanted the old me back – my old LIFE back. People tell you to look for the positives, but that is, at times, an impossibility. My thoughts are with you. You have achieved so much already, inspired so many and you can continue to do so. You must find your way, you still have so much to give. You are still in there somewhere, only you can find your worth again. What a wonderful giving person you are, you may not see it now, but trust that others can. Your judgement is faulty at the moment so you will have to believe what other people are telling you. Thinking of you x

    Liked by 1 person

  14. Great piece of writing Stuart.
    You must write more. It highlights the horrible russian roulette nature of this illness.
    My wife was diagnosed two years back and with two young kids the mental battle can be precisely as you ‘ve described.
    She did though garner positive experience by recently participating in a ‘mindfulness’ course. I wouldn’t wish to attempt to articulate the formal definition for fear of misleading you but with the depression she suffers from as a default, this assistance is of continual use.
    Please keep looking ahead. I realise how brutal the illness is and can be and can only hope you can find a scrap of that mental running strength you clearly have to serve you in this present challenge.

    Liked by 1 person

  15. I really respect you Stuart for having the courage to write down your thoughts and experiences as an inspiration to others. I have a sister who has fought MS for the last 30 or so years. She defies all medical predictions and prognosis and manages to look after her four very active young grandchildren and entertain all her family in her home. She too has been through long dark nights and times of hopelessness but her mantra is ‘I can and I will’…..be encouraged!

    Liked by 1 person

  16. Stuart. Well done for writing this; it can’t have been easy. I live near Inverness and was struck down by a rare illness in 2013 which made me go from highly active and outgoing to being bed-bound over night. I experience a lot of what you describe; the feelings, the pain, the lack of understanding etc. The NHS has also failed me big time, though many of those I’ve encountered as either too arrogant or ignorant to be able to ever admit that – which is half the battle! Over the past two years I have, however, learned to take some pleasure in what is can do, even if it feel substantially less worthwhile than what I used to achieve, and that helps to give me some purpose and happiness. Not going to lie, it’s tough, but the resilience of people and the human spirit never ceases to amaze me. Keep pushing on. You will find happiness again. Drop me an email if you ever want to chat.

    Liked by 1 person

  17. Keep writing – I find it incredibly cathartic to let it all out and I hope you do too. You mention anger, non acceptance and hope for the future. Hang onto these; at the height of my depression I had none of these and my mojo had well and truly gone. You might have depression but depression doesn’t have you. You’ve done so much to support other people with MS and lots of people think so much of you 😊

    Liked by 1 person

  18. This is very honest and open Stuart. Only you know how you feel but by putting it down it gives us an insight to your emotions. Hopefully by doing this it will release some or all of your negative feelings and get you back to doing what you love to do. Please don’t be discouraged., x

    Liked by 1 person

  19. I’m so sorry to hear about your recent struggles Stuart. I’ve followed your story and achievements for a long time now and have nothing but the utmost respect and admiration for all your efforts and continued fight with your condition and the challenges it gives you. My sibling has MS, and I can see much of your recent experiences in them too, so it’s doubly heartbreaking to read how desperately low you’re feeling. Never forget that there are many of us ‘strangers’ out there rooting for you from a distance. I appreciate you sharing so honestly and publicly these dark times of yours and I hope you draw some relief from it – I know many others will. Sending you much love and well wishes. X

    Liked by 1 person

  20. This is a very powerful story from deep in your heart and I hope that it putting it down on paper will help you to work through the negative thoughts and feelings. I find sometimes that writing can be just as therapeutic as running. Use your situation and your stories to inspire others and the mental rewards will be great! I truly hope you’re condition will improve again and you will be able to get back out there soon, until then, keep your head up and inspire others with your words! 🙂

    Liked by 1 person

      1. Hello. I read your homepage, and I find it nonsensical (it’s also littered with spelling and grammar mistakes.) I sincerely hope that this man isn’t offended by your comment/sales pitch, because he doesn’t deserve to be. He shared something private and painful, and you gave him cod science.

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s