Whats prompted this decision after all my positivity? On Friday I went along to a gig in a wheelchair, stayed in the chair for most of the time standing up for a matter of minutes ( 1-5) at a time, walking about 3 metres to take pics at different angles then sitting down again.I spent a large amount of time sat on a speaker in front of the stage. I was already extremely tired but adrenaline fueled me I guess. I rested completely on Saturday, apart from editing photos on my computer - which I also stupidly over did thinking it wouldnt affect me too much, spending far too much time, way over my recommended couple of hours maximum. Sunday I was so exhausted just getting a shower, I had to lie down before getting dressed and it took 4 attempts to get my hair dry, lying down resting between each attempt. Stupidly, despite being completely exhausted and needing to sleep I went out with my partner, thinking its only sitting in the car and sitting on the mobility scooter, however it was a nature reserve with rough paths and it was beyond exhausting just trying to stay on it and steer. Come the next day I did very little, I didnt shower as I was simply too tired to do so, just a quick wash - which I hate as I like a daily shower or bath, but I did not have the energy, I had to go to my local shop to buy food, using the scooter but rested other than that. Today I am crashing big style and stressed to hell because my body won't do what I need it to do and in truth I honestly don't have the help that I need today as my daughter is not well either. This is what nobody other than my partner or daughter sees. I would have rested completely and gone without a shower on a day with 10/10 exhaustion and severe symptoms, high pain levels, but was concerned that I might need to accompany my daughter to the hospital as she has a health problem that is concerning and may need attention. So, barely able to walk more than 4-6 steps without sitting, peeling 4 potatoes was exhausting - and left me in pain - can you imagine not having the energy to peel one potato without stopping to rest before peeling another - sat in a chair with a tray and chopping board on my knee to do this as I cant stand long and trying to reserve every scrap of energy. Asking my daughter to help chop potatoes, leek and celeriac turns into a long drawn out drama because of her own health problems, making me feel guilty for asking and ultimately a very stressful hour. This is when I have bought half of my veggies ready chopped in preparation knowing how little energy I have. That hour or so of stress just made me worse. But this is total honesty for once on how I am trying hard to actually have mere snippets of a life once or twice a month doing what I love and how it affects me, along with the totally open account of how in actual truth I am not really managing at times and stressed to hell because of it some days. Today is one of those days and whilst some may say I brought this crash on myself, I would say to them to try a life with M.E where everyone sees you appearing normal once every couple of weeks and sees photos I take online and assumes I am perfectly fine - but actually I struggle having a shower every other day, struggle to make a decent home cooked meal once a week/fortnight ( who wants to live on crappy ready meals full of additives) ( I actually feel so chuffed with myself when I manage to make a meal these days). Below will give you an example of a day in my life.
So what is it like having a M.E., or generally a good 90% of my days? A typical day for me - I wake up in the mornings with sore throats pretty much 40% of the time, its so much the norm that its never worth mentioning unless really bad, I just drink lots to ease it. I wake feeling like I have had no sleep - often enough I havent slept well, on average I only have 1 or 2 good nights sleep a week, probably about once or twice a week Im awake for at least half of the night, sometimes thats is because of pain or discomfort, other times there really appears to be no reason - I don't have caffiene in my diet and its not often that Im particularly kept awake by stress. I dont get showered/dressed straight away, as I often dont have the energy, so I sit with a drink and about 10 tablets, some supplements that I need to take each day to help give my body the best chance to function, I need to take at least two of these on an empty stomach and wait an hour before eating then a couple can only be taken with food. basically my day starts with resting as I still feel as tired as I did when I went to bed the previous night.
I need to be prepared and think ahead for every little thing that I do, so that I can reserve every scrap of energy, but fatigue can affect how well your brain works and I am incredibly forgetful now. So try to do things in one trip to a room.
I have found the having a good amount of protien in my diet seems to help me with energy and stamina so I like to have bacon or scrambled eggs or poached eggs, but usually lack the energy tov stand and cook so often just end up having cereal or yoghurt as these are easiest. I have to keep my calories down though as being less physically active means I dont burn calories well.
If I am having a bad day its more important to rest than shower so I will have a quick wash the next time I go to the bathroom and will sometimes stay in my PJs. But I try to muster the energy to bathe or shower.
( I actually started writing this in November but just finishing it in February!) I stuck to no photographing of gigs over the christmas months.
Stupidly I tried photographing a charity gig last week, I wasnt on my feet long really and did nothing else that day other than get dressed. But I paid for it, really bad, pain and exhaustion were severe for 5 days, enough to stop me doing anything at all. Even more stupidly I attempted a night out when already exhausted, to another charity gig, I didnt take my camera, but my partner did as a spare. Yet I was lucky enough to get a seat at the front and was tempted to take photos as its what I love and even though I only stood for a couple of minutes a handful of times Ive been in extreme pain and complete exhaustion ever since. Can you imagine what its like to just stand up for a few minutes 3-5 times and take photos and as a result be so ill tha you cant even get dressed more than once in 5 days, are in pain thwhole time and only get one decent nights sleep in that time? Thats my life! So it has to stop, no more band/gig photography, even though its what I love, I cant deal with the pain and exhaustion at this level any more. So thats my last gig unless I get the chance to do something very special and meaningful that really means something to me. Its hard to give up the very last thing that brings me so much pleasure, Ive had to give up cycling, climbing mountains, doing portrait and landscape photography, making jewellery, gardening etc etc
Its so frustrating that everyone thinks I look well therefore I AM well. But Im not. I wanted to go out yesterday but I had to spend the whole day resting on the sofa, I wanted to go out today and see friends, but couldnt as Im in too much pain and Im too exhausted. I may look well for a few hours a week but Im NOT, - Its the most frustrating thing in the world and the only people that seem to understand are those who have a similar illness or who have relatives/loved ones with a similar illness. The sheer effort it takes to just get out to see a couple of people that I would like to see is beyond most peoples comprehension. I used to climb mountains as a hobby, and in all honestly the effort to go out now is at least twice that of climbing Ben Nevis and at least I was just having a few aches and pains after climbing mountain - which would go away - I would sleep a refreshing sleep ( whats that like again?!!!) , I would still have energy after food!
I dont want pity, I just want people to understand what its really like. All my friends and partner are out having a great time at a fabulous charity event tonight and I have had to stay in with muscles quivering and jumping, pain almost everywhere and not an ounce of energy to function, complete exhaustion that a sleep does not help - ten sleeps dont help!. I could have got a taxi there but dont have the mental energy either. Often I cannot listen to one person speaking whilst there is music or a tv playing, I cannot separate the two noises to concentrate on one - today is one of those days, so live music and bright lights today would have been overwhelming.
Im not the only one, Ive a few friends with M.E and Fybromyalgia which has a lot of similar symptoms. One or two are still trying to forge ahead as I did for 13 years - I simply cant at present. But they suffer at home, have their brave faces in public for a few hours once or twice a month where everyone assumes they are fine. We do ourselves no favours in that people only see us looking our best even though our best is often only less than 50% of our pre illness selves and can only last minutes or hours to best, before severe payback.
For once this is not a positive post, its a realistic post. I am not depressed in any way, I feel lucky that I get to do some things that I love and that I have my lovely daughter and absolutely amazing partner in my life. But its a bloody boring life when you have a reasonably intelligent mind and cannot do 20% of what everyone else takes foregranted. Its a boring life for my partner who accepts me with this illness, who wants to go and do things together but is incredibly patient, understanding and helpful. He is the hero in my life. He never complains, yet cooks my meals and transports me places, waits patiently hours for me to be ready when he could be out doing all sorts. It the people who support and help people with M.E. who are my heroes, with endless patience and understanding, putting someone else first. Ironicly that used to be me as a nurse - and how I wish I could do that again!
