Following my last appointment with the specialist we decided I would complete an activity diary to see if that helps to identify any problems, also Ive was advised to read a book called Fighting Fatigue, which also suggests many ways to balance out activity and rest levels. I have identifyed the fact that I dont factor in rest properly, I rarely rest at all, I find I get incredibly bored by resting and doing little as Im more of a "doer", So I am working on trying to factor in short periods of rest between short periods of activity. The book also talks about swapping between physical, mental and social activities, and only doing what you can manage of each one with making the fatigue worse, taking a rest break then alternating the next activity to a different type. So I am trying this too. I have an appointment with the specialists later this week to look more at a plan to help me take control of the M.E. Yes, apparently the key is me taking control, hmm easier said than done as when there are things that need doing in life and events I would like to attend, that immediately uses up every ounce of energy and always results in several days of me being even more ill. So whilst trying to avoid the boom bust trap, normal life causes that to happen because I manage so little at present. I will discuss this with the specialist.
Im also seeing my GP again, Ive had an ECG and bloods, Im vitamin D defficient but otherwise bloods are normal. However, I am experiencing an irregular heartbeat several times a week, up to 4 times in a couple of hours, also my feet and ankles are swelling most days, which suggest a possible heart problem. So I will see what happens next with the GP.
Symptoms wise Ive never been worse. Its why Im awake typing now, Ive had 1 hours sleep, woken by pain.I went without pain relief yesterday, possibly foolishly as I walked a very short walk, and tried to do a little photography. I was already in pain the entire day yesterday - a hot bath with epsom salts helped loads and distraction helped a fair bit. But my extra activity knocked my pain levels up from about 5/10 to 7-8/10 all night. Ive taken paracetamol with no effect at all, but really dont want to take codiene - I just dont want to end up addicted to it. So Im running another hot bath at 6am :/
Im experiencing symptoms Ive never had with M.E before - gastro intestinal problems, food intolerances possibly, Im not tolerating foods well, its like having irritable bowel syndrome. Im experiencing frequent headaches, sore throats, a complete intolerance of temperature changes, sometimes sensitivity to light and frequent sensitivity to noise - I frequently cant talk or listen to someone with music or the tv playing. Most of the time I prefer complete silence and often struggle to hold a decent conversation. My brain isnt functioning properly, Im incredibly forgetful and cant find the words I need to use. Sometimes I can manage reading and have struggled to work out puzzles recently. I feel muddled sometimes and Im struggling to learn new things. Nausea. A constant feeling like I have the flu. Ive virtually lost my sense of smell and have had a feeling of inflammed sinuses on and off for months, now my sense of taste is also extremely diminished - this might not sound important, but when you feel ill and cant get out, losing the sense of smell and taste seriously reduce enjoyment of the simple things like a nice bath bomb, cream or perfume and Im gutted I cant taste my favourite meals so much now. This is how Ive been for the last 3 months,
Im normally fairly positive and find things to keep myself occupied whilst I have less energy, but 3 months of this constant, fatigue, pain, and all the symptoms above has worn me down, so Im feeling low in mood too. I sat and cried this morning, simply because I feel so ill - Im trying to fight it but fighting it takes so much strength and makes me feel even iller, so its harder to find the motivation - but Ive not given up. Im strong minded and stubborn - which is how I got to walk 8 mile walks in 2014. Only I know its going to be a long, slow hard slog. I find myself accepting help more often lately because I dont have any choice - thank God for my boyfriend and daughter - without them I do not know how I would have got through this last 3 months.
On a positive note I have got out to the local quiz this last 5 weeks, its only about 800 foot walk - which is often a struggle, but Ive managed it. Last week I could barely cope with the music playing and the guy asking the questions - I couldnt think straight and it took me forever to complete about a third of the written questions/puzzles than I normally would, but we won, for the 4th time in 5 weeks amazingly. I also had my first proper night out to see a band in months, I enjoyed it but not as much as usual as I wasnt up to parr, luckily the bus stops right next to the place I went, so virtually no walking helped me get there. Im hoping to make it back out for my birthday in 2 weeks with a few
friends.
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After hot bath, totally exhausted from drying myself and getting dressed, but my pain has reduced in most areas of my body to about 3/10 with is a relief. Now resting.
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Urgh, that last 10 minutes after my bath, the pain has returned right back up to 8/10 in my arms, wrists, shoulders, neck, upper chest, upper back, but only 2/10 in legs, hips, lower back. My nursing experience tells me its silly to continue with the codiene, so Ive taken the 60mg for today. ( Im prescribed 1 dose a day which is so ridiculous - if I have a good month then I just manage, but this is a very bad month so far and I will be lucky if they last 3 weeks - I must discuss this with the Dr.
Back to resting. Too tired to think to type and stupidly its taking far too much energy to even type, grrr.
I will leave this on a positive note, I took photos of my frogs yesterday, I set up slowly over a few hours used fresh moss to make a mini makeshift pond.
Here are the resulting images, no editing, theyre straight out of camera.
So, even when you are feeling dreadful, you can do something positive - my photography is my silver lining in this currently rather moody dark cloud of an illness.
