Posts Tagged With: invisible illness

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

Looking for a geocache (on a good day)

Looking for a geocache (on a good day)

I was scrolling through the WordPress blogs that I follow and I stumbled across myjourneythroughme and her post about National Invisible Illness Week (Sept 9-15 2013), a list of 30 questions to answer about her invisible illness. These questions are the starting point that Lisa Copen (founder of Rest Ministries) used to create a meme (an idea passed from person to person within a culture [thank you Jess B & Wikipedia]) to help raise awareness of invisible illnesses (which vary greatly). Today I am feeling well enough to concentrate on filling out my own meme. So here goes …

 

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

1. The illness I live with is: Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Syndrome.
2. I was diagnosed with it in the year: I am still awaiting a full diagnosis but have suffered on and off since 1990. I had a partial diagnosis in 1999 then relapsed in Dec 2011 and finally have a more solid idea of what is going. I am now waiting for the fatigue clinic appointment.
3. But I had symptoms since: I was 14 years old.
4. The biggest adjustment I’ve had to make is: Allowing my children to help me with everyday chores and letting my partner drive when I am tired.
5. Most people assume: There is nothing wrong with me, because I look fine. I don’t look tired, I can move well enough and I can be quite active.
6. The hardest part about mornings are: Trying to move when the alarm goes off. You would not believe how much concentration is needed to open your eyes. Then of course there is the standing up to get dressed, pins and needles in your feet & toes (most uncomfortable), and then there is the light-headed dizzy spells – walls are my best friend in the morning.
7. My favorite medical TV show is: I actually don’t watch TV. I would much rather be social networking or blogging.
8. A gadget I couldn’t live without is: Well that’s easy, my smartphone. I can do everything on there that I can do on my netbook.
9. The hardest part about nights are: If I didn’t have the Amitriptilyne then I would have to say going to sleep. My body could be dead to the world with not enough energy to even move – but my brain wakes up and won’t shut up.
10. Each day I take _17_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried relaxation/meditation but I need to be stricter on myself, I keep letting stress get in the way. I also use the blog as a form of “alternative treatment“.
12. If I had to choose between an invisible illness or visible I would choose: Invisible – there may still be a lot of stigma behind having an invisible illness but it is easier to hide behind the smile mask.
13. Regarding working and career: That is on hold at the moment. I discovered that I am unable to stay awake/alert enough to work as a teaching assistant. I even tried temping just a few days a week as a TA, but it hasn’t worked out as the fatigue is so unpredictable and I was letting schools down and even got sent home on a few occasions.
14. People would be surprised to know: I’m not sure about this one. People who know me know that I still enjoy walking & geocaching and that I like to push my illness to its limits with the occasional rock climb, abseil, kayak trip and camping.
15. The hardest thing to accept about my new reality has been: That there are days where I simply cannot do even the simplest of tasks without assistance.
16. Something I never thought I could do with my illness that I did was: Continue to enjoy some extreme sports. However I do need to rest for a few days before and I get no choice but to recover for several days afterwards.
17. The commercials about my illness: I live in England and as far as I am aware there are no commercials regarding CFS/ME and Fibromyalgia. However I have seen some IBS adverts and frankly they only deal with the mildest forms and are no help to me at all.
18. Something I really miss doing since I was diagnosed is: At the moment it is working.
19. It was really hard to have to give up: Work… Yes you read that right. I also had to give up being a Cub leader for a year and that was a really hard decision to make, and one that I am still making now. I don’t want to leave my Cubs, but I don’t know how much longer I can carry on leading them.
20. A new hobby I have taken up since my diagnosis is: Blogging & vegetable growing. The blog helps me to get the negative thoughts out of my head and make something positive from them. Who knows maybe someone has been helped from reading my woes.
21. If I could have one day of feeling normal again I would: Fit in all the visits that I owe friends and family. Sometimes I feel like I have become a recluse because I don’t go out to see people everyday.
22. My illness has taught me: Is still teaching me… to slow down, manage my time, accept help from others and enjoy each day as it comes because life is far too short.
23. Want to know a secret? One thing people say that gets under my skin is: “There can’t possibly be anything wrong with you! You look absolutely fine!” You know what love… I look fine because I force myself to look fine so that you don’t make silly comments like that!!!
24. But I love it when people: Treat me like they would anyone else, but deep down they know what is going on. Most of my friends can read the signs of my flares and know how and when to step in.
25. My favorite motto, scripture, quote that gets me through tough times is: Treat each day as if it is your last. Because life is too short and you never know when you will be unable to carry on doing your favourite things.
26. When someone is diagnosed I’d like to tell them: YOU ARE NOT ALONE.
27. Something that has surprised me about living with an illness is: How many people I have met that are also living with the same illness. We compare stories and strategies. It has been very helpful.
28. The nicest thing someone did for me when I wasn’t feeling well was: My fiance buys me little things, like gluten/wheat/dairy free chocolate.
29. I’m involved with Invisible Illness Week because: The stigmatism behind invisible illnesses needs to stop. We are NOT making this up – it is real.
30. The fact that you read this list makes me feel: Happy that my message is coming across and that you may have learned something new.

 

As some of you are aware, I have now moved the blog to www.geocachingwithgeokids.co.uk but felt it was important to post this here too.

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Categories: Life goes on, My life, my journey | Tags: , , , , , , , , | 5 Comments

My life, my journey…

Living with an invisible illness…

I'm Faye and I live with an invisible illness.

I’m Faye and I live with an invisible illness.

I figured it was about time I face up to the reality of my current situation, as a way of helping me to deal emotionally with what is going on with me physically. Since the age of 14 I have been fighting against my own body.

It all started back in 1990, a few months after an operation to remove my adenoids (for the second time). I had always been a very active child and teenager, with so much energy I didn’t know what to do with it. So when I collapsed at school more exhausted than I could ever imagine or explain for no apparent reason, I was distraught. I was so tired, I ached from head to toe, I literally felt as though I was dragging ten tonne of lead weights around with me all the time.

The months that followed were pretty awful, I was subjected to so many blood tests I felt like a pin cushion. My doctors had no idea what was wrong with me. First they thought I had flu, then they thought I had Glandular Fever (I remember having a sore throat that lasted for about 12 months) and I never seemed to get an answer.

I remember finding it extremely difficult to get up and get myself to school. On “bad days” I would stay home, the school would send work home for me so that I didn’t miss out on any education. On “good days” I would drag myself into school because I had had enough of being stuck at home resting, only for my parents to get a call, usually by lunch time, requesting that they collect me as I had “passed out” during class or recess. This would go on for weeks at a time, sometimes even months. And still the doctors had no idea why or how to treat it. Around the same time there were regular newspaper reports of “yuppie flu” – hard working adults in high powered jobs were also “burning out” and suffering similar symptoms as myself.

However, as a teenager I kept on fighting with myself. I carried on going to school when I could, I put up with the doctors telling me that any pains I had were just growing pains due to puberty. I put up with the tiredness, resting when I could, but still trying to keep an adolescent social life going. I continued to visit the doctors every time the symptoms got bad or something new was happening with me. They begun to make me feel as though I was making it all up, a hypochondriac, a fraud! I completed school and went out into the grown up world of full time work, but still I was being plagued with extreme tiredness, pain, dizziness, periods of “blackout”, fainting, lack of concentration, loss of coordination and intolerances to various foods. I don’t remember how many times I changed jobs and career paths trying to find one that fitted my needs, and yet I was still getting nowhere with the doctors. Repeated visits with repeated conversations going over the same symptoms time and again. This just made me more tired and more saddened because I still had no answers.

Then at 21 I fell pregnant, my whole life changed. I had a renewed energy and a new lease of life. At first I was more tired than ever before but at least most of the pain was subsiding. By the time I was 4 months in to the pregnancy I began to feel alive again, I had energy that I never had before. After seven years of feeling “dead to the world” I was able to do everything again. Those were the best months of my life and then my daughter was born. The energy levels continued for a few weeks and then I began to “crash” again, same as before. This time though the doctors put it down to post-natal depression. So I began to have counselling, only to find that I wasn’t suffering from that at all. Within a year of my child being born, I was finally being heard by my doctors. By this point I had done a little bit of research about the old “yuppie flu”, there was now a name for it, Chronic Fatigue Syndrome, and it was just starting to be recognised as an illness by the medical profession and so my gp referred me to a clinic in London for assessment.

In 1999, after two more years of doctors appointments, blood tests and good old British waiting lists, I finally got seen by a specialist. I had been living with extreme fatigue and pain for nine years and had pretty much retrained my body to cope by doing short activities followed by rest, not working a full time job and relying on my family to help out with everyday chores. I spent over an hour with the specialist, explaining everything from the tingling in my fingers, to the constant muscle aches to the uncontrollable sleepiness, detailing my daily routines and how I was coping with running a home and looking after a toddler. Only to be told at the end that “you may have had Chronic Fatigue Syndrome but as you have had it already for nine years and are coping, you are at the other end of it now and you should see a full recovery within the next couple of years. Just carry on as you are.” So I did …

During that decade I did carry on as I had. I was a stay at home Mum, had my second child, I began volunteering at the local primary school a few hours a week, studied a vocational course part time, volunteered at the local Scout group, walking/geocaching, camping and eventually began working part time at the primary school. All because I was feeling so much better and well again. I really believed that the “illness” had gone. So much so that I took on my first full time job in 12 years. It was all beginning to look very good, it was as though I had beaten whatever it was that plagued me for all those years.

And then it hit me like a head on car crash! In December 2011, at work, in a classroom with secondary age children, I was struggling to keep my head up and eyes open, I could hardly manage to climb the stairs because the pain in my legs was excruciating, my shoulders felt as though they were being crushed and I eventually collapsed in a heap in the staff room and I knew it was happening all over again.

The unfortunate thing is, although I saw a specialist all those years ago he never did give a definitive diagnosis, so for the last 18 months I have had to go through the entire process again. Which has resulted in missing work, losing my job because of too much time off and not being capable of even the easiest of everyday chores. No diagnosis – no treatment – no cure! There is a massively long list of illnesses that need to be eliminated before any referral to a fatigue specialist can take place, and finally we have got to that stage. The gp has ruled out hypothyroidism, rheumatological problems, dietary causes, glandular infections and more. I am trying out a medication used by sufferers of Fibromyalgia (chronic pain) and going through the whole activity/rest/activity process, but as yet I am still unable to manage working. The symptoms change almost hourly, and the “crash & burn” can happen at anytime with no warning. The wait for the specialist and any form of diagnosis can be up to twelve months, with little or no financial help.

I have been hunting the internet for advice on how to manage the symptoms, looking for answers on how to ease the pains so I can at least continue with everyday chores (most of the time I force myself), and trying to find a regime that will enable me to go back to work. I have trawled through UK Fibromyalgia and ME Association websites only to find that what I am doing at the moment is what both sites recommend. So to protect myself against muscle wastage, I continue to walk everyday despite the pain levels and the fact that it leaves me feeling as though I haven’t slept in weeks. I force myself to get up every day and try and complete at least one household chore without help. However, it leaves me continually trying to recover, doing my damnedest to not become depressed and to hide the majority of the tiredness & pain and inability from my children, parents and grandparents.

I am Faye, I am 37, I am living with an invisible illness and today is not a “good day”…

My Family

My Family

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Categories: Life goes on, My life, my journey | Tags: , , , , , , , , , , , , , , , , , , , | 5 Comments

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