It's natural the people want to fight an illness, push themselves to do more, be determined not to give in to the illness - it's human nature. With the majority of illnesses and conditions the determination and desire to carry on regardless doesn't pose any problems, it actually helps. With M.E things are very different - I learnt this the hard way!
For years I didn't realise I had M.E, when I was really young I was taken to doctors with severe headaches, episodes of blurred and double vision and dizziness. I was thought to be making it up, my mum continued to bring me to different doctors saying a child at 4 or 5 doesn't know about the symptoms I was describing. Eventually at 6 or 7 I was diagnosed with childhood migraines. At 8 I was in a car crash, our car was a total write off. Then at 14 I was diagnosed with a condition in my knees were the bone scrapes against the knee cap rather than gliding along cartilage. I started having back pain prior to my teens.
So up until I was 20 I never realised that there was another problem. I'd always just thought that the pain I felt was from the car crash, knew I'd migraines and ignored the extreme tiredness and any other symptoms I felt. I'd been called lazy in primary school which sort of stuck with me - so when walking home from school and wanting to lye down on the ground or pretending to be sick at school so I could go to a bed in the sick room and sleep all day, I just thought it was laziness. I managed to just get on with things though.
When I did get a diagnosis of Fibromyalgia and M.E in my early 20's my family didn't believe it existed or thought that it was "just tiredness" and "aches and pains". For years then I lived in a push - crash cycle pushing my body to do more than it was capable of doing and then crashing completely afterwards, not knowing the detrimental affect that it was having or would have on my health.
Although trying to explain my M.E, people didn't understand or I was told it was all in my head, so it was easier to hide it and if asked how my 'aches and pains' were I'd say I was fine. I had a young child then and pushing my body was the only way I was able to do things, trying to push past the complete exhaustion, pain, muscle spasms, migraines and other symptoms.
To the majority of people I seemed ok, I was using crutches at the time but managed to get to the doctor, visit relatives or have a family day out. The saying that 'no one really knows what goes on behind closed doors' is very true. No one realised that after a visit to family, shops or a day out that my body would crash completely.
My body would generally crash the day after I'd been out. When my body crashes I can sleep constantly, anything from 18-23 hours at a time, only waking to use the toilet, take a drink and then back to sleep for a similar amount of time. This usually lasted 2-3 days then, other crashes lasted weeks.
It's hard for someone who doesn't have M.E to understand what a crash feels like. It's like being tortured, I would be in agony but unable to wake up to take painkillers - often unable to be woken at all or if I was woken to eat, I'd fall back to sleep with food still in my mouth. My symptoms were worse when I crashed, increased pain, muscle spasms and muscles twitching and jerking, migraines etc.
I would need to get to the toilet and be trying to wake myself up but my body was so exhausted I couldn't waken. Many times I'd try to wake myself up enough so I could get up - feeling guilty because I wasn't spending time with my son but my body had just shut down. When sleeping constantly like that you loose all track of time. I would be awake briefly at times when my son or fiancé came in but later have no memory of conversations they had with me as my body was so exhausted my brain wasn't able to function properly.
Gradually I'd come out of the crash and go out again to visit people, to shops etc - 'normal' life had resumed and people just assumed I was doing other things in the time they hadn't seen me. I wanted to look after my granny when she was ill although I wasn't physically well enough to do so. Granny was an amazing, kind and caring lady, she was more like a Mum to me than a Granny and had spent years looking after me so it was a privilege to be able to look after her when she needed it.
For months I helped granny with personal care while my fiancé did the things I was no longer able to do, cook dinner, make lunch and cups of tea, light the fire. I didn't know it at the time but my body was running on adrenaline in order to be able to help granny. I crashed on the days someone else was with granny and slept constantly. Over time things got harder and symptoms worse, I'd have to sleep on the sofa and have my fiancé wake my when I needed to take granny to the toilet.
Granny had a fall and was sent to hospital, she later when into a nursing home. Once I stopped looking after Granny the impact of pushing my body beyond what it was capable of for so long became evident, I had a relapse and was in bed for 4 1/2 months. I slept almost constantly through out this time, my throat was so sore I lived on milkshakes with ice cream loosing 2 1/2 stone.
My health had declined, symptoms became worse and new symptoms appeared. I started to experience paralysis with loss of speech. Numbness and loss of feeling in my arms and legs became more frequent. It was during that time I got a hospital bed and when my body got stronger and I was able to be out of bed it was from then on I needed to use a wheelchair.
I didn't know then about pacing with M.E, that I should have been alternating activity with rest. I'd not looked into M.E too much online and didn't know that with M.E - any activity that the body cannot easily tolerate can cause a worsening of symptoms, relapses and disease progression. So with my new wheelchair, although my M.E was worse I continued to live in a push-crash cycle - although the crashes were worse and longer.
I'd try to be out of bed for a few hours or do something but then end up back in bed. I pushed myself again to do things, have a family day out but then would sleep constantly for days or weeks at a time. I felt so guilty, I was missing out on my sons life. I was told by others that I needed to do more, get up out of bed - I couldn't, my fiancé knew I couldn't but people telling me I needed to do more only increased the guilt I already had. At that stage because my health had got worse, I couldn't push my body the way I used to so the smallest activity made things worse - yet determined not to let the illness beat me I pushed myself to do things as often as I could.
My family hadn't understood I was ill to begin with so couldn't understand why I needed a wheelchair. I spent the majority of my time lying in a darkened room unable to do anything. When someone came over - if I was able I'd push myself to get up and appear 'normal', when I couldn't I was told that if I wanted to get better I needed to start exercising and stop spending all day lying in bed.
At that stage I still tried to push myself, tried to have a bath or shower when I wasn't able. Feeling guilty for not spending time with my son if I could get out of bed, no matter how exhausted I was or how bad my symptoms were I wanted to do something as a family - which inevitable ended up with more time in bed sleeping with increased symptoms.
We had decided not to have anymore children due to my health but I fell pregnant after an antibiotic interfered with the pill I was taking. Two doctors advised that I should consider having an abortion here on medical grounds - I refused. I had to stay on strong medication throughout pregnancy and thankfully our son didn't have any major affects when withdrawing from the medication.
My health has deteriorated further and I'm now bedbound with full time carers. I have communication sheets for when I wake up with paralysis unable to speak. I've problems with eating due to choking so live on meal replacement drinks. The only time I leave the house is for medical appointments, if they can't come to me. Due to orthostatic intolerance getting worse any outings for appointments are while lying flat on an stretcher taken by ambulance.
The old wheelchair I had is no longer suitable, I can't sit upright and don't have the strength to self propel any more. I'm waiting on a specialised tilt and recline chair and hope to be able to get out of bed again and spend time with my family. I want to be able to watch my kids play. My youngest son will be 2 in a few weeks and all he has ever known is mummy in a hospital bed in a dark room. I've never seen him on a swing or slide in the play park, my eldest son has had several hip hop shows with solos and learnt to swim, all of which I have missed.
Some people with M.E have their health deteriorate no matter how well they rest or pace themselves. For me, my health has got worse largely in part because I pushed myself to do to much and lived in a push crash cycle for so long. My determination to carry on regardless and not to let the illness beat me has resulted in me loosing any independence that I once had - being now completely reliant on other people for everything.
I know now that in order to be able to do more, we often have to learn to do less. M.E is different from other illnesses, trying to push yourself and get on with things no matter how bad you feel makes you worse. Giving yourself a hard time about things you can't do or listening to others who don't understand and tell you that you 'should' and 'need' to do more makes things worse as you are then feeling guilty and unable to rest properly.
I've met a lot of people with different severities of M.E, the only thing that I've heard that helps with M.E is pacing. Learning to balance activity with rest and not pushing your body to do things that it can't easily manage. Listening to your body and resting when you need to and trying not to pay attention to the people who tell you that you 'should' do more when your body isn't capable of doing so.
When my new wheelchair comes, I now know and have learnt that the only way I'll manage to be able to do more overall is by accepting that at times when my body is struggling - I need to do less!