Month: May 2016

Very busy. I was an active person.. also a lot of family stress to deal with.

Walking, studying and working my dream job that I spent 10 years training for. Also fun activities and adventures with my now grown up family as we used to do.

Sick, just sick. My whole body hurts so much, pain, burning. I feel so sick, unable to do anything but rest as best I can, which is almost impossible with the pain and sickness.

When I can get out, clean and fresh. When the pain can be dulled by pain medication and when I feel happy enough for the pain not to matter.

There is no typical day with M.E.

You will never know how bad it can be unless you have it yourself. I never understood M.E. until I had it. It’s like being sick in reverse..the usual things to do to feel better don’t work. Exercise makes the illness worse, anything using energy makes it worse..even the happy things. There’s no cure.

Full, I had two children under 5. Worked full time in a job I loved and had just helped to restore and rebuild a house

Knowing that on any given day I can do “normal” things. Having friends and a social life- being able to work full time. Being considered a full person

No control over limbs- incredible pain, headaches, brain fog. sleepless nights

being normal again.

alarm goes off, I have to snooze it for half an hour before getting up else my legs collapse. Showers have to be judged as they make me ill. Pacing- no background noise like radios- tired all the time.

That the people suffering are still the same people who need to be part of the human race and not ignored, shunned or pitied. Also- that doctors do not always recognise the illness so it takes a lot of courage and effort for sufferers to get what limited help there is.

There is a life to have with ME.

I was so young when I started to get symptoms I really don’t remember being completely free of them. What I do remember is feeling ok between the dreadful joint pain. I loved ballet and was really sporty at school. I can remember feeling like I could do anything. But after exercise, I would suffer horrendous pain and it wasn’t sustainable. I had to give up PE at school at 9 years old in order to maintain attendance for the academic subjects.

On the inside I feel like a really active person – I long to run… I dream about it. I long to move my body freely without paying a price. I guess I miss knowing I can do what I want to without suffering afterwards.

From the age of 13 – 18 I was completely wheelchair bound, and bed bound for a lot of that time. My worst days at that point were pretty horrific. Unrelenting, excruciating pain is what stands out the most. The constant head pain stopped my brain from functioning properly; I couldn’t think about the simplest things. The frustration of not being able to scratch an itch, or turn over in bed as your body felt like it was made of lead, was gut wrenching. This was on top of all the other symptoms; heart palpitations, crushing fatigue, dizziness, loss of temperature control, constant sore throat and flu like feelings. I was extremely lucky to make a fairly good recovery but have had several relapses since this time when I’ve been back in this position. In between the relapses, it’s been a matter of managing my symptoms and energy and trying not to overdo things, which would always make things worse.

My best days would be the days where I control the M.E. rather than having it control me. I can feel now whether I’m on an upward or downward spiral and I can be pretty sure of my limitations.  I know what state I will be in if I push these limits. When I can organise my time and plan my energy and rest, the feeling of control is very positive.

A typical day is all about managing my symptoms and energy levels. There are always some symptoms including pain, heart palpitations, headaches, swelling, ‘brain fog’ and stiffness. By managing what I do and how I do it, I can reduce these symptoms and ensure I can cope during the next day. I have to plan ahead at all times to make sure I do not over-exert and have enough time to recover from any activities. Now I have a young and wonderful daughter to look after, this is a much harder job, but all the more reason to get the balance right.

I would most like the world to have a small amount of understanding. First, it is important that people understand that not all people suffering from these conditions show visible signs. Depending on my level of suffering, I can cover it up. This doesn’t mean that I am not in pain, or that I won’t be in pain later. It is also important that the world understands that the conditions do not exist solely in the head of the sufferers. It is not caused by depression, although the extended suffered can leave you feeling depressed. In fact, some of the times during which I have been at my worst physically have been during some of the happiest periods of my life.

My husband sometimes knows my limits better than I do. I think this is because I don’t like to admit I have limits and I can get carried away. Most people I’ve met with a similar condition seem to have the same inner desire to be active.

I was a pretty normal little girl and I loved playing with all my friends that lived on my street, enjoying anything that gave me a chance to get mucky like painting, ‘helping’ with DIY and jumping into any mud I could find.

The carefree way I lived my life, being able to spend time being a kid without constant thoughts about the state of my health and my future.

My best day with ME is when I can get through a standard day (being able to wash and dress myself, cook myself to one meal and perform one household chore) without being in physical pain or crying by bed time.

I look exactly like you. I don’t sit in a chair (due to poor hand eye coordination and concentration I am actually unable to drive one when tired!) and I don’t have a white stick but my illness is still debilitating.

Every time I need to use a disabled toilet because I cannot physically stand in a queue I am scared that someone will call me out. “Faker”, “You don’t LOOK sick” and “Skiver” have followed me like a cloud since I was 11 years old, making it hard for me to take the steps I needed to really rest and recover for fear of the anger of the teacher, the nurses or even my friends.

Please think before you stick up for the disabled by accusing people of abusing disabled spaces, 96% of disabled people do not use wheelchairs (Papworth Trust disability facts and figures 2010) but we need them too.

If I say I can’t do something don’t try to persuade me (or any sufferers in your life) that I could do it if I tried or that I should try a treatment that worked for your second cousins dog sitter, I know my body and I have tried everything. Even if it comes from the best possible place you won’t be telling me anything new!

Thank you for reading this, the fact that I can share my story shows how much improved I am. When you are with a person with ME it’s probably because they are at the peak of their health and what you wont see is the impact of that interaction on the rest of their lives.

Busy, fun, hopeful, hard working

Walking and being “myself” I don’t recognise the person I have become.

Being in so much pain and having so little hope that I started thinking about committing suicide. I promised myself that if in a year’s time nothing had changed I could do it. Luckily for me as I understood more about pacing things did improve.

It is difficult to say as ME is such a long journey. Was it the first time I woke up without a fever, or was it when I managed to walk to the end of my front garden path (5 metres!).

A day without pain is pretty good. Many of the “big days”, the birth of my daughter for example, are difficult to remember. Having ME seems to interfere with laying down memories. I think the best day is yet to come.

I wake up at 11.30, come around slowly, empty the dishwasher and get breakfast. During breakfast, I decide what the top priority task for the day is and try to get it done. I can do about 40 minutes before I need to rest so it might be an opticians appointment, mending something that has broken, doing my finances, getting the food bought.

Then if I am pacing properly (not always the case) I rest for an hour listening to the radio. By now my daughter will be up and we will decide who is best able to walk the dog, if neither of us can manage we call my mum, who is 84, and she walks the dog for us! Once the dog is walked there is a huge sense of relief as she has been looked after. If I have walked the dog that is my second 40 minutes used up and I am resting again.

I have one activity session left which I often use to cook an evening meal. The evening is most often spent watching TV as it is a reasonably low energy activity which I can usually manage. I will get to bed at 11.30.

Unfortunately sleep is unpredictable, It might take me an hour to get to sleep or 5 hours. When I was working part-time not sleeping was a huge problem. I feel lucky everyday that I am now living on my savings and I can be much more relaxed about it and just get what sleep I can. It is not an exciting day but it means no constant upper respiratory infections, a brain that can string 2 sentences together and much less pain.

Living like this for a day, a week or a month is not a problem, living like it for years means there is little room for friends, work, holidays or family. To include these in your life means you have to push beyond your bounds and make yourself ill. 1 night out might need 3 weeks in bed to recover. So for 3 weeks no housework is done, someone else has to walk the dog and life is put on hold, again.

How difficult it is emotionally, physically and mentally. At the moment it is a life-sentence , it never ends, there is no break from it, each day is a fight to balance what the world demands from you with what you are able to give.

If you want to know what it feels like to have ME then the next time you have a bad case flu think of it lasting for the rest of your life.

I would like to emphasise that it has taken me 25 years to get from being up for 10 minutes at a time to now managing 40 minutes 3 times a day. The doctors would classify mine as a mild case of ME or in some circles “cured”. Although it is fantastic that I can now walk the dog for 20 minutes, I can’t do it every day, it hurts, I have to go straight back to bed after doing it and  it means I don’t clean my house.

AMAZING! At University for the second time, starting to build a career in the fitness industry, working part time as a gym instructor.

Being able to exercise. Being able to do the most basic things, like wake up and not feel absolutely horrific, flu-like, exhaustion beyond words.

Non-functional, like the worst flu and worst hangover, combined with having run a marathon.

They don’t really happen!

Housebound, unable to cook, unable to exercise at all.

It is a very real, biological illness, that is seriously underfunded, with absolute inadequate treatment from the NHS.

Thank you for doing this Mike.