I have decided to create a bit of a diary for you to follow or not as you wish... If you have ME it may just make you feel a little more "normal" realising that although our journeys are very different we all still have similarities.
Some days I wont be writing on here as I will be too unwell but I will more than make up for it at some point........
Monday 24th January 2011
Managed to get to sleep last night (well this morning) about 1.30am , I never woke up at all until hubby arrived with a nice hot cup of tea and a crumpet at 12.30. As much as I wanted to jump up there and then, it took me 10 Min's to move my body enough to sit up every muscle in my legs was aching my neck was stiff and my arms just weren't having it.
I think the excessive pain in my legs was due to walking a circuit of the supermarket yesterday then taking the dog down to the field (all of about 100 yards) he ran and ran for ages using all his energy - it was wonderful to watch. Just to feel the lovely fresh air and coldness on my face was inspiring and made me feel alive... Its now the little things that matter the most.
It is now 3.30pm I have made it downstairs and I have even had a wash which some days I don't even have the energy to do myself, which is totally not like me , I have always been so particular about my appearance (I still am) but this life is about choices and pacing yourself . I have managed to make a cup of tea and tidy the dogs toys away before I have sat down to update this. This is a good day, I have got things done
Tuesday 25th January 2011
It is 3.40 in the afternoon I have found it very difficult to get out of bed this morning . My legs would hardly move this morning (even worse than yesterday) and for the first time ever the tops of my arms had stiffened up and where incredibly painful. My head is so foggy that I am finding concentration and thought very difficult and my eyes are so sticky and sore... This I am assuming is due to my lack of pacing on Sunday. Maybe I should have chosen between walking the dog or going to Asda and not done both! What a ridiculously limiting disease this is. My entire day will now consist of laying on the sofa after I have finished writing.
One of my good friends is moving house today with our other friend helping , I offered to go and help by making Tea and watching the dogs but they wouldn't have it (they where just thinking of me) but this illness just tears me apart in situations like that. The only thing I can say logically is thank god for fantastic friends like this who put up with my cancelling days with them and just accept me for who I am now - Manda and Steff I love you both xx
27th January 2011
Finally made it back to my blog... Yesterday was a bit of a forgettable kind of day . Not as much pain as the days before but the foggiest head ever... I couldn't remember a thing; words and names totally evaded me and I couldn't concentrate on anything .. So all in all it was a "different " kind of bad day.
Now onto today - I had 12 hours of unawakened sleep and was woke yup by hubby at 1.pm as always the wonderful man brought me a lovely cup o tea and a sandwich for lunch, (what would I ever do without him), but also a quick reminder that I have a me nurse appointment at 2pm yikes .
After a very quick assisted bath and hubby's excellent driving I was only 5 minutes late. But that was ok because she is always running late.. Now I will give you a short breakdown of what happens with my me nurse at these appointments;
I have been seeing my me nurse now for 6 months and she has taught me so much and has also really helped me handle situations ... Its all about energy usage - imagine yourself as a car with a certain amount of fuel..
.
Fuel consumption goes right up in the following situations
Stress full situations
Physically demanding situations
Noisy, bright environments
Fuel can be regained by
Fun
Laughter
Happy situations
Socialising
I also have learned to listened to my own body-
If my body emits a whisper (to me that is getting a sore throat) that should be enough to tell me to rest up and take my foot off the gas.
After a whisper it will speak to me (foggy head, headache and sore throat)
If I still don't listen it will shout at me (upper and lower leg pains, arm pain, back pain foggy head ,headache and sore throat.
The above symptoms are just MY symptoms- we all have different journeys hence different symptoms
We also need to take time out to get our minds to quieten down so a good meditation cd is a must one that helps us focus on breathing from our abdomen and not our chest and one that quietens our mind to enable us to sleep.
Well that's about all I am able to write for today but If this helps then I am so glad
Take care
xx
3rd February 2011
It has been a few days since I was able to update my blog.... I have had a bit of a relapse over the last few days as I had to go in town with my daughter and buy hubby his cards and presents - one hour in town equals 3 days in bed - How unfair is that . I am obviously very very low in energy but I refuse to give up my life!! I know I should maybe use a wheelchair so it isn't using up as much energy but I so want to see glimpses of the old me and that is why I do these things and make myself ill for days on end.
It has been an interesting couple of days as I have been following yesterdays debate in the house of commons and things are hopefully looking up for M.E sufferers.
On the other hand after 6 months of applying & a medical I received an answer on my DLA application- this has been turned down and it looks like they have ignored every answer I have given and interpreted it in their own way- I am of course appealing and will keep you up dated of this.
That's as much as I can manage for today but I am putting some links up about the house of commons debate
01-03-11
White rabbit white rabbit white rabbit -- Happy 1st of March where the snowdrops are beginning to appear and the nights are getting a little lighter thank goodness,
It has been a while since I have been on my blog and I am afraid most of that is due to a form of bullying from a specific member of my family would you believe, It sapped all my energy and left me with precious little .. Since then my pains have been getting worse as they are now in my leg joints i.e knees and hips as well as in my muscles so now the GP has done another ten million blood tests (yes only a slight exaggeration! I also have to go for an x ray on my knees and hips to rule everything out so she can then tell me what I have already guessed and that is the dreaded fibromyalgia along with my friend M.E.
Some positive(ish) news is that I am going to the red cross tomorrow as I discovered they hire wheelchairs long term on a weekly charge so as from tomorrow my world will become a much bigger place (but that of course depends on my powers of persuasion to get people to push me around in it)
Ok I am going to try and get some sleep as it is 1.21 am here and I am still in a lot of pain so I will say goodnight and be sure to read the blog on bullying x
It has been a few days since I was able to update my blog.... I have had a bit of a relapse over the last few days as I had to go in town with my daughter and buy hubby his cards and presents - one hour in town equals 3 days in bed - How unfair is that . I am obviously very very low in energy but I refuse to give up my life!! I know I should maybe use a wheelchair so it isn't using up as much energy but I so want to see glimpses of the old me and that is why I do these things and make myself ill for days on end.
It has been an interesting couple of days as I have been following yesterdays debate in the house of commons and things are hopefully looking up for M.E sufferers.
On the other hand after 6 months of applying & a medical I received an answer on my DLA application- this has been turned down and it looks like they have ignored every answer I have given and interpreted it in their own way- I am of course appealing and will keep you up dated of this.
That's as much as I can manage for today but I am putting some links up about the house of commons debate
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01-03-11
White rabbit white rabbit white rabbit -- Happy 1st of March where the snowdrops are beginning to appear and the nights are getting a little lighter thank goodness,
It has been a while since I have been on my blog and I am afraid most of that is due to a form of bullying from a specific member of my family would you believe, It sapped all my energy and left me with precious little .. Since then my pains have been getting worse as they are now in my leg joints i.e knees and hips as well as in my muscles so now the GP has done another ten million blood tests (yes only a slight exaggeration! I also have to go for an x ray on my knees and hips to rule everything out so she can then tell me what I have already guessed and that is the dreaded fibromyalgia along with my friend M.E.
Some positive(ish) news is that I am going to the red cross tomorrow as I discovered they hire wheelchairs long term on a weekly charge so as from tomorrow my world will become a much bigger place (but that of course depends on my powers of persuasion to get people to push me around in it)
Ok I am going to try and get some sleep as it is 1.21 am here and I am still in a lot of pain so I will say goodnight and be sure to read the blog on bullying x
