Ankylosing Spondylitis – Fatigue is my tether

It’s kind of apt, that I have reached this subject in the story of my AS journey today, as it is something which is a real problem for me again now. I will admit I have been feeling pretty ill this week, but any odd thing which happens seems to hit straight at my AS.

So, hey, let’s talk fatigue.

Not everyone has it with their AS, if you don’t have it, I seriously hope you never get it. For those of us who have it, well, we all know the constant battle to keep going despite it, when all it wants you to do is give up trying to keep going.

I have spoken of fatigue before in different posts, so I shall try not to repeat myself too much. But the thing about fatigue is it’s the symptom which can defy all the medicines, so even if your pain reduces massively on the right medication, the fatigue may get better, but it’s still there putting brakes on you. It tells your body quite bluntly when you haven’t got the energy to do something.

I get very frustrated in my day job, because I say to people (and I have said this before) I have fatigue, and they talk about feeling really tired. IT ISN’T FEELING REALLY TIRED!! It is feeling like you have to fight your body to make it move, it is feeling like you’re going to faint unless you get some fuel in you (food, a bit of advertising, my favourite quick hit energy boost is a snickers bar, shove it in and carry on lol) It is feeling like your brain is full of a pea-soup fog that you are trying to make it think through. It does mean your reactions slow down. It is feeling like you just want to vomit, or lie down and never get up again… Joy, of joy, my friend fatigue. Don’t we all love it…

So on to my story for today, I spoke about pacing, many moons ago, and at the point I learned pacing it was pain prevention pacing, but after I’d been on my course in the Royal National Hospital for Rheumatic Disease, I realised that although my fatigue was a lot better, now I was on the right medication, my fatigue was still holding me back and stopping me whenever it chose to. I couldn’t eat later than an hour after a normal meal time, otherwise my energy level would drop too low, I had to have so many hours sleep, I couldn’t do anything very energetic otherwise my energy just declined in a steep slope and then I’d feel really ill (said it all before).

So I looked at my life, and finally accepted my job was making my fatigue worse than it needed to be. In my job I had to travel and as I was running training courses I had to get up very early and travel to get there for the start of the day. It wasn’t every day, but it was once a week for eight weeks, three times a year, and just doing it for that one day a week would take more than a week to get over, so the worsening fatigue just kept building. Then the eight weeks would be over and I’d spend a few weeks starting to feel better, then it would all start again.

I tried staying in a hotel the night before, but even making the day longer by travelling in the evening made my fatigue bad.

So what were my choices?

I spoke to my employer. They would have given me a different job, under reasonable adjustments, but… I like being challenged at work, and to be able to be influential, and do something meaningful. The replacement job would have been a job just to give me something to do. I would have probably just supported other people, not the same at all, totally un-rewarding.

I could have been medically retired (this was a while ago, it probably wouldn’t have been an offer in this day and age, but they did offer it then). But the money wouldn’t have given me enough to pay our mortgage, and life would have been really hard and hellish, and I didn’t fancy going through that, I still needed work, I wasn’t willing to go that far in the change.

So the other option, leave and get a different job. That’s what I did.

I had to take a massive cut in salary, so it wasn’t an easy decision, but the decision was my health… or… well a life of feeling really horrendous but carrying on every day.

The new job was still a complex job, motivating people and managing change, and actually managing employee well-being, laughable, but fab of them to have put someone in that role who really understood what it meant.

I did still find it physically demanding. But I only had a 15 minute drive into work, and to manage my fatigue when I was walking between offices I’d walk slower so I’d use my half full well of energy reserves more slowly. Think of yourself like a car, believe me it works.

I did miss my old job, and my old salary, obviously, like mad, but I knew it had been the right thing to do, because I work to live, not the other way about, and the change meant my weekends were no longer just two days to get well enough to go back into work again, but two days in which I could have a personal life.

So actually attending the course in Bath, had some huge impacts on my style of life, too, not just on my AS and my relationships.

AS is my burden, writing is my escape.

And if you are looking for the best help to improve your Ankylosing Spondylitis then for me it was the AS course at the Hospital for Rheumatic Diseases in Bath, UK. This hospital is now threatened with closure, if you wish to sign the petition to keep this hospital open, please click here. It changed my life (You can attend as a private patient or on the NHS). And if you would like more information on AS take a look at National Ankylosing Spondylitis Society, NASS, website.

Illicit_LoveMy debut novel, Illicit Love, is now available on amazon.co.uk and amazon.com (writing fiction has been my preferred painkiller for years and now I can share my escapism characters).  Sapphire Star Publishing are the publisher. If you want to find out more go to my books page or my website www.janelark.co.uk  like me on Facebook or follow me on twitter @janelark

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About janelark

a writer of authentic, passionate and emotional love stories
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7 Responses to Ankylosing Spondylitis – Fatigue is my tether

  1. beverly plank lettko says:

    jane, sorry to hear about your illness. I had rheumatic fever and survived somehow without penicillin (1948). the reason i’m writing is, i’d like to learn the names of parents of lady Elizabeth leigh, born at Stoneleigh abbey. she married Thomas moore (not poet) and they had daughter, Elizabeth moore (born 1811) who married Thomas betts. this Elizabeth was my great great grandmother. can you help me with lady leigh’s parents and location of records. I am 77 and would like to learn this for the genealogy i’m working on. I don’t know where (sources) to search for info in England. thank you, Beverly lettko

  2. sharma sunil says:

    i have spondalytis please help me

  3. It helps so much to know someone else has experienced this.

  4. Whydo itmatter says:

    I’ve been reading most the night, looking and searching to see if this is real. I’ve been so scared to find out, that the endless search would reveal that I was the only one and my weakness to this disease are my own. I feel like I’m fighting a losing battle everyday, trying so desperately to explain to family and friends that I’m not being lazy and that it’s not being tired from depression(which I’ve had to question it myself). It has taken everything from me…..Grrrr! I hate to admit how much has been taken…I’m a Leo. My family was my reason for living! And now they say I’m not the same person; that I have no pride, I’m a sinking ship. But even the fury that that ignites is not enough fuel to get up…this is my first experience with the AS fatigue issue at age 43, prior I was the youngest of three. I was the first to break the chains of welfare and assistance, after having my first st age 16. I’d write more but my tablet is out of battery. What to do? How much does it coat?

    • janelark says:

      I’m so sorry you’re having such a tough time, I always say it’s a shitty disease, you only understand if you have it. But to win you have to stop fighting, because fighting only makes the fatigue worse, you have to go at the pace the fatigue lets you and keep stopping when it tells you and move as much as you can when it doesn’t. If you’re on Facebook join the Ankylosing Spondylitis Groups, then hopefully wherever you are in the world someone might be able to point you in the direction of decent doctors. Bath RUH is brilliant the UK, but I don’t know about other countries. Take care of yourself, and get your family to read some of the posts, have you seen Cookie’s blog https://thefacesofankylosingspondylitis.com/ which shares a whole load of personal stories, maybe they might get it if they hear other people saying the same things as you. Good Luck. I hope things get better.

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