A week or so on from commencing my plan. Ive managed my short walks 5 days out of 7 this week, which is a good start for someone with M.E. 10 minute walks seemed to be just right, not too little, and not too much as I could complete the walk without stopping but most definately needed to rest by the time I climbed the two flights of stairs to get home.
I did push things a bit too far on Friday, I needed something from our local shops which are a 15 minute walk for me. There is a bench half way and I sat and rested 5-10 minutes . I managed to get to this bench on the way back and knew by that time I had pushed myself too far. Just a total of about 20-25 minutes was pushing my body too much. I rested 10 minutes and walked the rest of the way home, really struggled to get up the stairs. Pain followed on that evening quite quickly, although not too severe. I slept very poorly afterwards.
What happenned the following evening is pretty much the usual for me after I have been active - I often cannot sleep for 24-48 hours. I do not know why this happens, it just does. I ended up getting 1 hours sleep, but got woken up, then a few broken hours sleep dotted about over the next 12 hours or so. I cant catch up on sleep through the day easily just now as there are workmen doing work outside my home for up to 12 hours a day 6-7 days a week. Yes even from 9am on a Sunday, today. So my sleep patter is totally messed up.
I feel dreadful. I dont feel with it at all, kind of spaced out. The usual sore throat, aches and pains plus fatigue. However, trying to complete the smallest of tasks at home is completely exhausting - getting dressed resulted in me having to sit on the bed to recover from putting trousers on. Whether this is the result from walking too much on Friday or the combination from walking most days and the knock on effect of dreadful sleep, all on top of my usual symptoms? It is what it is. Basically I feel even worse than I have been. I have not managed my once or twice weekly get togethers with friends, resulting in seeing nobody but my daughter this week. I had been feeling very positive but now feel very low. I am not choosing to feel flat or low. I am thinking positive thoughts, but my brain isnt functioning, my emotions are flat, Im so completely drained. I have felt disorientated, and disconnected in the last couple of days, yet psychologically I had felt fine before starting my plan. I have had to mute the tv when my daughter speaks to me as I cannot separate the two, I can only concentrate on one thing at a time. I have felt mildly muddled at times too, most likely the exhaustion coupled with total messed up sleep pattern, lack of sleep. This is all the side of M.E that nobody ever sees in me, as I only see people when Im at my best.
Diet wise Ive eaten well, continued eating lean fish and meat every other day, but have not felt in the right place to stick to a weight loss programme. Ive continued taking my supplements.
Today, despite feeling my worst I want to get out to a garden centre to purchase something specific, its something I need to do in the next 2-3 days, as I have plans Im working on this next week. The bus stop is a good 10 minutes including a walk over a bridge, so a bit of steep walking and the same on the way back without the bridge. So just getting there and back will push my limits again. Walking from the bus stop and around the garden centre I anticipate 15-20 minutes. So basically to do the one thing that I want to do in the next 5 days is going to push me over my limit, into the boom bust cycle which I wanted to avoid. But this is a one time thing this year that I need to get done this week, ( photograph some plants for a photography competition that I would have to enter this week) so my choice is to not do something I love, get enjoyment out of it, have a chance at doing well in a photography competition and be completely exhausted for however long afterwards( usually 3-7 days), or stay at home, continue my plan and be exhausted any way and not doing what I love.
Given that being single and only seeing friends on average once a week because of my illness, getting bored stupid at home alone all the time, I am tempted to try to get the plants I want today, so I can take photos in a couple of days time and hope that some will be good enough to enter the competition. At least I wont be bored whilst feeling ill, I will be able to set photography equipment up bit by bit without tiring myself further really and take photos sitting down, then I can enjoy editing and sharing.What would you do? If I could afford a taxi there and back it would not be a problem. however, I am not deemed disabled or unwell enough to be awarded PIP as I can walk for 10 minutes, even if it isnt every day and even though quite obviously from this last week it is making me worse trying to do so each day. I am following the advice given by health professionals - to push myself physically. In fact they advised pushing myself more, cleaning windows etc - that one was hilarious - I had told them that one task is something I struggle to do more than anything so I was told to do it repeatedly. Which makes sense for a lot of illnesses but not M.E, why do the one thing that your body cannot tolerate, more and more to the point that you end up housebud or bedridden as a result? Yet there is evidence that this advice might be making people with M.E worse. I will stick with my 10 minute walks, if it helps in time great, if after a few weeks Im still feeling worse then I will stop.
Dilemas of going with the plan or actually doing what I love. What would you do? Stick with a plan that is making you feel even more ill in the teensiest hope it might build stamina and activity levels, but knowing it actually makes a lot of patients much worse or go back to the boom bust cycle and get to see frriends or do what you love once a week and really suffer afterwards.
Now I need to sleep...
Sunday 25 June 2017
Monday 19 June 2017
Here I go again - Renewed drive to beat M.E
Im feeling super positive and happy lately. Life is good. Im enjoying exploring spirituality and reading a little psychology - both hugely beneficial. Im still struggling with the M.E, still only getting out once or twice a week, so none of that has changed. However Ive certainly got used to being single and psychologically feel better than I have in years, not that I had a problem, but I feel happier, content, at peace now whilst I didnt before.
Despite my attempts to increase my activity levels earlier this year, Ive not managed to increase my stamina at all. Frequent minor illnesses hampered my attempts. All attempts at increasing activity and stamina have failed. BUT Im getting back to basics now, a new plan. This time Im cutting out the one thing that I love that has been draining my energy and has resulted in experiencing severe symptoms in days afterwards - yep photography. I had been grabbing the opportunity whilst out with friends seeing bands to take photos of the bands too. Its amazing how much this drained me. So 1st thing in my new plan - 28 days of no photography unless its a quick snap. Time to concentrate ALL my effort on beating this illness.
So my plan, which Ive started this week
1/ Get out for a short walk EVERY day, no matter how dreadful I feel , starting with a simple 10 minute daily stroll. Increasing the length of time each week or two depending on how my body is responding. Now Ive done this before, tried earlier this year and a few times the last 2 years and its not worked, BUT I did this in 2014 and it led to me being able to rebuild my activity levels massively that year, with regular walks of between 3 and 5 miles. So, this is why Im trying it again. Now this method doesnt work for everyone, graded exercise has made some people worse,( it has made me worse in the past too) but Im building up very slowly and gently so I do not make myself worse. I will listen to my body. But I will stick to this ridgedly every day for at least a month, even if its just 10 minutes a day. Ive done it before and Im so determined to make it work again. If this doesnt work then Ive no other option to continue my life as before, including the occassional boom bust cycle in order to do the things I love, as without doing what I love in life there is little point.
2/Super super healthy eating and losing weight. I didnt lose the weight earlier in the year. So I will kick start very slow weightloss again. 190lbs a couple of days ago, Im aiming to reach 170 if I can. Ive continued to eat fish and chicken once or twice a week over the last couple of months, partly following a very well educated friends advice I have increased this. Im not so keen on red meat but tried it a couple of days ago and may eat it once a week. If after another couple of months eating meat I see no difference Im likely to return to either being vegetarian or pescatarian though. Im eaing a diet rich in low fat foods, pulses, grains, lean meat, vegetables, fruit. Low sugar, very little processed foods. Calorie counting as I cant exactly lose weight with increased exercise at present.
3/Supplements & medication, I will continue taking D Ribbose and CoQ10 plus NADH. I am also trying Curcummin to see if it helps with pain relief, Milk thistle due to a liver problem which is being investigated, iron, vit C, vit B, vit D, flaxseed oil, Ginko biloba and ginseng. All of which Ive checked are fine with my GP following an ongoing liver and gall bladder issue. Ive recently had my thyroxine reduced from 100mcg to 75mcg as TSH was 0.5. Im battling pain relief, trying to hold off anti inflamatories as much as possible until my stomach issues are identified for definate, as still need to rule out an ulcer. So taking Lansoprazole until further tests and diagnosis determines the cause of the pain. So its codiene and paracetamol for pain, but trying to take as little as possible, using hot baths and heat packs instead whenever possible.
Apart from those simple steps Im ensuring a good sleep pattern ( well trying to in this heat), keeping myself thinking positively, avoiding being around negative people, keep stress to a minimum. Avoiding spending excessive time using a computer, building in rest periods to every day, meditating once a day. Im factoring in doing things that I really enjoy, making jewellery, reading, time in the countryside, time spent with my daughter and friends. Im even going to try sitting in the sun, which for some reason Ive never enjoyed, but Im pasty white and some extra sunshine would do me good :)
So thats my plan. A bit boring but its here for me to refer back to and keep it documented.
Getting to the giving up photography temporarily, Ive met a lot of resistance from my friends and fellow photographers, probably because they know how much I love my hobby and how it drives me. Maybe they have not realised the severity of how it impacts me in following days. Recently I photographed a gig and some dancers and it left me in a terrible state for the best part of 7 days. Actually pretty much bed bound for 2 days. Compared to attending a gig a few days ago, not doing photography, I was able to get out the following day. Its a no brainer really. Why on earth make myself so ill, just to take a few photos of a band, which turn out poor anyway as lighting is dark resulting in noisy images. Its not as if gig photography is my thing, Im never going to be winning awards with the images. Plus, I realise how much Ive neglected my friends in doing this and I would rather enjoy their company and the band. So no more gig photography in low light pubs full stop, only in places where lighting is enough to allow me to take higher quality images.
As a photographer I have been very driven in my passion, Ive allowed it to seep into all areas of my life. I love what I do. But its so easy to get caught up in taking photos only thinking about getting "that shot", and you miss the magic of the moment. For me, as Im continuing my spiritual and self improvement path, I realise now that Ive been missing out on being "present" in the moment a hell of a lot, as Ive been so focused and driven. So taking a step back is also a positive option for me, I can get to really enjoy all those magic moments for what they are, not thinking about how compose the best image, how to process it and how many likes or how it might be recieved by other photographers etc. I would rather look back on magical moments that the photographing of those magical moments. So when I pick my camera up again, I will hopefully not keep clicking away, but be selective and remember to live in the moment aswell.
Another positive is that I can focus on creating to headwear for photoshoots that I would like to do, making them completely unique, why do the same as everyone else.
I created the headwear featured below and enjoyed making it.
Despite my attempts to increase my activity levels earlier this year, Ive not managed to increase my stamina at all. Frequent minor illnesses hampered my attempts. All attempts at increasing activity and stamina have failed. BUT Im getting back to basics now, a new plan. This time Im cutting out the one thing that I love that has been draining my energy and has resulted in experiencing severe symptoms in days afterwards - yep photography. I had been grabbing the opportunity whilst out with friends seeing bands to take photos of the bands too. Its amazing how much this drained me. So 1st thing in my new plan - 28 days of no photography unless its a quick snap. Time to concentrate ALL my effort on beating this illness.
So my plan, which Ive started this week
1/ Get out for a short walk EVERY day, no matter how dreadful I feel , starting with a simple 10 minute daily stroll. Increasing the length of time each week or two depending on how my body is responding. Now Ive done this before, tried earlier this year and a few times the last 2 years and its not worked, BUT I did this in 2014 and it led to me being able to rebuild my activity levels massively that year, with regular walks of between 3 and 5 miles. So, this is why Im trying it again. Now this method doesnt work for everyone, graded exercise has made some people worse,( it has made me worse in the past too) but Im building up very slowly and gently so I do not make myself worse. I will listen to my body. But I will stick to this ridgedly every day for at least a month, even if its just 10 minutes a day. Ive done it before and Im so determined to make it work again. If this doesnt work then Ive no other option to continue my life as before, including the occassional boom bust cycle in order to do the things I love, as without doing what I love in life there is little point.
2/Super super healthy eating and losing weight. I didnt lose the weight earlier in the year. So I will kick start very slow weightloss again. 190lbs a couple of days ago, Im aiming to reach 170 if I can. Ive continued to eat fish and chicken once or twice a week over the last couple of months, partly following a very well educated friends advice I have increased this. Im not so keen on red meat but tried it a couple of days ago and may eat it once a week. If after another couple of months eating meat I see no difference Im likely to return to either being vegetarian or pescatarian though. Im eaing a diet rich in low fat foods, pulses, grains, lean meat, vegetables, fruit. Low sugar, very little processed foods. Calorie counting as I cant exactly lose weight with increased exercise at present.
3/Supplements & medication, I will continue taking D Ribbose and CoQ10 plus NADH. I am also trying Curcummin to see if it helps with pain relief, Milk thistle due to a liver problem which is being investigated, iron, vit C, vit B, vit D, flaxseed oil, Ginko biloba and ginseng. All of which Ive checked are fine with my GP following an ongoing liver and gall bladder issue. Ive recently had my thyroxine reduced from 100mcg to 75mcg as TSH was 0.5. Im battling pain relief, trying to hold off anti inflamatories as much as possible until my stomach issues are identified for definate, as still need to rule out an ulcer. So taking Lansoprazole until further tests and diagnosis determines the cause of the pain. So its codiene and paracetamol for pain, but trying to take as little as possible, using hot baths and heat packs instead whenever possible.
Apart from those simple steps Im ensuring a good sleep pattern ( well trying to in this heat), keeping myself thinking positively, avoiding being around negative people, keep stress to a minimum. Avoiding spending excessive time using a computer, building in rest periods to every day, meditating once a day. Im factoring in doing things that I really enjoy, making jewellery, reading, time in the countryside, time spent with my daughter and friends. Im even going to try sitting in the sun, which for some reason Ive never enjoyed, but Im pasty white and some extra sunshine would do me good :)
So thats my plan. A bit boring but its here for me to refer back to and keep it documented.
Getting to the giving up photography temporarily, Ive met a lot of resistance from my friends and fellow photographers, probably because they know how much I love my hobby and how it drives me. Maybe they have not realised the severity of how it impacts me in following days. Recently I photographed a gig and some dancers and it left me in a terrible state for the best part of 7 days. Actually pretty much bed bound for 2 days. Compared to attending a gig a few days ago, not doing photography, I was able to get out the following day. Its a no brainer really. Why on earth make myself so ill, just to take a few photos of a band, which turn out poor anyway as lighting is dark resulting in noisy images. Its not as if gig photography is my thing, Im never going to be winning awards with the images. Plus, I realise how much Ive neglected my friends in doing this and I would rather enjoy their company and the band. So no more gig photography in low light pubs full stop, only in places where lighting is enough to allow me to take higher quality images.As a photographer I have been very driven in my passion, Ive allowed it to seep into all areas of my life. I love what I do. But its so easy to get caught up in taking photos only thinking about getting "that shot", and you miss the magic of the moment. For me, as Im continuing my spiritual and self improvement path, I realise now that Ive been missing out on being "present" in the moment a hell of a lot, as Ive been so focused and driven. So taking a step back is also a positive option for me, I can get to really enjoy all those magic moments for what they are, not thinking about how compose the best image, how to process it and how many likes or how it might be recieved by other photographers etc. I would rather look back on magical moments that the photographing of those magical moments. So when I pick my camera up again, I will hopefully not keep clicking away, but be selective and remember to live in the moment aswell.
Another positive is that I can focus on creating to headwear for photoshoots that I would like to do, making them completely unique, why do the same as everyone else.
I created the headwear featured below and enjoyed making it.
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