Small Beginnings

Eleven years ago today I was sent home from college with a virus that would change my life forever.

It was the second term of my second year of university. I was twenty years old and had just returned from spending a weekend with family, to celebrate my brother’s eleventh birthday. The Monday after I got back, I woke with a stomach-ache that got progressively worse as the morning went on. By the time I reached my afternoon seminar I looked so ill my tutor propelled me out of the door with strict instructions to get straight home to bed. I made it only just in time and spent the next two days while my housemates were at work, on a makeshift bed on the bathroom floor, rather than drag my exhausted frame back and forth to the toilet.

By Thursday, the symptoms (of what I assumed to be gastroenteritis) had started to subside, and I made it back to college for the end of the week. My plan for the weekend had been to do some housework, visit my grandparents, teach Sunday school and have lunch out with friends. Instead I spent a quiet weekend at home, too wiped out to make it further than the corner shop. I planned to use the time to catch up on the work that I’d missed, but when I tried to sit at my desk, my muscles screamed for me to go and lie down. Even curled on the sofa or propped up in bed my eyes struggled to focus and my brain just refused to take anything in.

On Saturday evening friends came round for dinner and though I attempted to be sociable for a little while, by the time my housemates were plating up the meal I’d excused myself and was back in bed. I intended to watch a film before going to sleep, but I never even got so far as choosing one. It was rare for me to fall asleep before midnight, let alone sleep right through the night, and any sounds in the house would often wake me, so I was astonished to awake to bright daylight having not even heard our visitors leave.

Our house was always busy on Sunday mornings as we were all involved in a local church and had to be there at different times for our various activities. I concluded from the silence in the house when I woke that my housemates must have left for church without me. I was surprised when I looked out of the window however, to discover that the street was almost completely devoid of cars; the road was usually full of cars till gone lunchtime on Sundays as most of the residents enjoyed their weekly lie-in. Wondering just how late I’d slept for my neighbours to all be up and out, I checked the time on Ceefax only to discover it was gone midday, not on Sunday but on Monday. Somehow I’d slept through an entire day without any recollection. I suppose I must have got up at some point on Sunday to go to the loo if nothing else, but if I did then I have no memory of it.

That should probably have set the alarm bells ringing, but knowing it might take a week or more to get over a virus, I assumed it was nothing to worry about and tried to carry on as normal. My symptoms however, failed to go away. For the next eight months I went down with virus after virus, never fully recovering from one before developing another. I had daily headaches and muscle pain, felt dizzy and sick if I stood still for too long and had flu-like symptoms after any strenuous physical exertion.

The fact my housemates worked in the day made it easy to hide just how bad I was feeling. They had no idea I was coming home between lectures instead of staying on to study, and as they were often out in the evenings they didn’t see me resorting to more and more shop-bought meals rather than managing to cook fresh food. I was no longer meeting with friends during the day, and was skimping on my personal laundry and housework in order to keep up with my share of communal tasks. I still made it to all my lectures and could walk up to a mile at I time if I didn’t have to rush, but my social life dwindled and although my workload stayed the same, I was struggling to get through it like I never had before. Despite struggling to do only a fraction of what I should have been managing however, I still didn’t realise there was anything serious wrong. I assumed that I was just a bit run-down and if I kept on going I’d be alright in the end.

I friend and I had been planning to have a joint party for our twenty-first birthdays which fell on the same weekend. The closer came though, the more I realised I was simply too ill to go ahead, opting to have a family meal at my grandparents’ house instead. Having to cancel my twenty-first was the shock I needed to finally seek medical help. I’d been in denial for months about just how serious my symptoms were but I could no longer ignore the fact that I hadn’t felt well for a single day in almost a year. As one friend put it: “you’re only twenty-one once [despite popular claims to the contrary] so you’d have to be dying to cancel your party, and if you were dying, you’d have nothing to lose by going ahead.”

So I made an appointment with a doctor, and was assured by a locum that there wasn’t anything medically wrong with me. Students are always getting ill because they drink and smoke and party too hard, and though I didn’t drink, or smoke, or party hard, I wanted to believe that there was nothing wrong, so I pushed my worries out of my mind and carried on as before. The following January, a massive relapse pushed me to the point where I could no longer live in denial as others couldn’t fail to notice my symptoms, but that is a story for another day.

It ultimately took just over two years, and a dozen health professionals, to diagnose my illness. The treatment I was offered triggered further major relapses and I was bedridden and jobless by the age of twenty-three. Now in my thirties, doctors tell me I will never be able to return to work, may always depend on carers and will never live anything close to a ‘normal’ life again. I intend to do everything in my power to prove them wrong, but in the meantime, I take life one day at a time, and try to celebrate the things I can do, rather than dwell too much upon the things I can’t.

On Monday 10th March, 2003 when I woke up with a stomach-ache, I never for one moment imagined the road that it would lead down.

To all the friends and family who still walk this road beside me, I can never thank you enough. Your support has got me through the last eleven years; I have no doubt it will get me through the next eleven too.

I couldn’t do it without you.

This entry was posted in Myalgic Encephalomyelitis (ME) and tagged , , , , , , , , , , , , , . Bookmark the permalink.

19 Responses to Small Beginnings

  1. saxoma says:

    You are always in my thoughts and prayers Sarah. A bit of news this end – Giles and his wife Sam have just had their second baby – a little girl called Matilda Eve.

  2. Mia says:

    Dear Sarah
    I also suffer from Fm/ME and know what you are going through. I became ill about 9 years ago and endured quite a lot of ridicule from my doctor before I was diagnosed. I am so great for a husband and two sons who walk this road with me.
    Blessings xx

    • Thanks for sharing your story. The quest for a diagnosis is so often a difficult one and even when you have a diagnosis, the ridicule and negativity doesn’t always end. It frightens me to think that though it took two years for my own diagnosis, compared to many others that was actually quite quick.

  3. quiall says:

    We are the new normal! Life is for the living and you have chosen to do just that. Good job!

    • If I woke up cured tomorrow, I hope I’d still hang on to what illness is teaching me about living in the moment and making the most of what I’ve got, rather than worrying what I’ve not got. I suspect it will take my whole lifetime to learn it, but ultimately I think it’s a much healthier way of living, chronically ill or not.

  4. What a gut wrenching back story to your illness. I remember believing my doctor when I had what I thought was a silly head cold/sinusitis for over two months.. she kept telling me “next week you’ll be better”.. and boy did I latch onto that sentence, until finally realising my life would never be the same again. I have no doubt you will one day prove those doctors wrong re your future. In the meantime, wishing you a good day and plenty more with those who walk beside you. x

    • Thank you for your good wishes. Wishing you a good day too. Your experience sounds extremely familiar. It took years for me to get a straight answer about my prognosis and even now doctors can’t agree as most know so little about the illness that they’re only guessing.

      • Who would have thought in a world of ever advancing technology and space exploration, patients would be subjected to guessing games by doctors? To dwell would ruin a perfectly good day, to remain strong and travel the path, educating doctors… well, that’s really the only option… for now. I hope the sun is shining on your couch. x

  5. Care Tuk says:

    Bravo – from one kindred spirit to another…….one day…one hour… minute some days – right? But why are we amazed when they add up to years? (Even tho’ there are days they hadn’t!) You are loved and cared for by many who you may never ever know – remember you are like your shadow – extending to where you may never, ever be……..
    Thanks for being a ‘seed-chucker” being bold enough to share and help those who don’t ‘get it’ maybe try to…….I always say – I can’t fault them for what they DON’T know……and pray they never have to in instances like ours………

    • So true. There are days each second seems a lifetime and it is all I can do to survive from one minute to the next. Yet somehow more than a decade has flown. I was utterly clueless about ME until I had personal experience of it so I can only patiently speak of my experience and hope that others will be receptive to it. Thanks so much for your comment.

  6. Claire says:

    This is my 11th year too! It would be so easy to be bitter at everything that has been taken away (and sometimes I am). But as Quiall says – life is for the living! No matter how we go about it, we’re still here, we’re still living. Most days I have a great life 🙂

    • I think there will always be bad days when it’s hard to cope and impossible not to grieve for what we’ve lost, but it’s important to remember that that’s precisely what they are – bad days! Most other days won’t be like that and there is still so much life to be lived. I’m glad you are learning that too. Thanks for your contribution.

  7. hayley-eszti says:

    The support from family, friends and online chronic community is invaluable. I hope people know just how much their support and understanding is needed, and we love them so much for being such great people. I hope the next 11 years lead you to meeting more lovely people through this blog. Hugs, Hayley-Eszti

  8. Wow this sounds really similar to me. Similar age, similar symptoms and the way it all unfolded. I was in my last year at Uni when I got ill and it all happened almost exactly the same, along with the terrible advice and lack of help from doctors, and then the treatment causing relapses. It’s sad to hear that someone else is on such a similar journey, it really sucks but I know that people can and do recover from this illness and find answers that help make a big difference. I wish you the best of luck and hope that we can both keep going and improve our situations.

  9. I really feel for you, when I first got ill it was such a change from my ‘normal’ self that there was no hiding it from my husband and kids, even work could see it as I was almost hyperactive before. I was blessed to have an amazing Dr who I am convinced gave me such good advice and treatment that I recovered enough to not be bedridden (I was at the start of my illness). I realise I am unbelievably lucky my GP was amazing and hearing stories like yours make me so angry at initial treatment of this illness is so poor. Sending prayers and positive energy xxx

  10. Pingback: I'm Faking Wellness Again - Am I the Only One Dancing?

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