i have always thought that those special days where you feel better were good days.
but today when i was explaining what a good days was i realized that they were really only better days. a good day would be the day where i felt like i used to pre m.e and fibro.
for me a bad day means i need help to dress and it hard to make myself a sandwich a lunch time as every thing hurts and all i want to do is sleep, to hold a conversation is hard work and the thought of having a shower is just to much to cope with.
a better day means i can dress myself and shower, i can make my own lunch and maybe go out for and hour on my scooter before the pain and fatigue become to much to cope with. so could i really call it a good day.
to me it is but when i talk to others i realize that they have no concept of my life or the restrictions placed on it by this illness.
one of the biggest problems i have is that i have adjusted to my days and no longer see them as abnormal it just it how it is. i no longer feel strange using a scooter to take the dog out or to go around the supermarket, it does not feel strange that i go to bed at 6.30 pm or that i use a stair lift to go up and down the stairs.
but to the rest of the world my life is restricted it does not allow me to participate within a work place or have an active social life.i can not care for and clean my home nor cook for my family on a daily basis. but in my world this is not strange i no longer think in terms of what i cant do but rather in terms of what i managed.
so im excited if i have made a card, written a letter to a pen pal, helped prepare dinner or have taken the dog out on my scooter. its fantastic to get out into the garden and sit in the green house for 30 mins and plant some seeds. i love it when i get to go to my parents for the day and sit in there kitchen and chat or a friend pops over for an hour.
i feel proud if i manage to dust the lounge because i have managed to help but i no longer exspect to be able to clean the whole house as its not an option.
so i have better days but am hoping that one day i can again have a good day.
b
Tuesday 30 March 2010
Tuesday 23 March 2010
how do you cope with so much pain?
everyday i hurt, all i want to do is cry.
today my pain was confirmed and named by a dr i have as i new fibromalgia but i did not know the severity of it. every pressure point he touched sent tears streaming down my face and made me buckle at the knees.
hopefully the information he has sent to my gp and the meds he has recommended will help.
i just dont know how to deal with and cope with the pain. some days it gets to much.
today my pain was confirmed and named by a dr i have as i new fibromalgia but i did not know the severity of it. every pressure point he touched sent tears streaming down my face and made me buckle at the knees.
hopefully the information he has sent to my gp and the meds he has recommended will help.
i just dont know how to deal with and cope with the pain. some days it gets to much.
Wednesday 17 March 2010
up and down yoyo time!
i know just as every one who has ever had m.e knows that pacing is the way to control your symptoms.
however the difficulty is that to pace effectively you have to find your base line and if you are like me this means that you really cant do a lot! for my symptoms to remain at a constant level with no increase, my day would consist of a shower (sat on a bath board with a hand held shower), dressing, going downstairs on the stair lift walk to kitchen to get breakfast, return to lounge and rest for an hour, 20 mins reading/comp/tv, and hour resting, make lunch, an hour resting, 20 mins tv/comp/or craft. an hour rest. help to prepare evening meal sat on perch stool not more than 20mins, eat evening meal, go to bed rest one hour tv 30 mins rest then sleep.
at this level i have no increase in symptoms and eventually a decrease in my physical issues. but to do this sends me nutty. no wonder a lot of people with m.e get depression as well living like that is not living!
so do i do this every day, no i dont, i have a couple of days a week where i do this. the rest of the time i live a little each day. i do something that makes me feel like i am part of the world.
so i go out on my scooter, or pop to mum and dads for a bit, or watch a film, some times i make cards. these are the things that help me to carry on and stop going nutty. but they also cause me to yoyo and boom and bust a bit.
the problem is i have not worked out a way of pacing and living.
my symptoms have not reduces nor changed particularly in the 2 years since i was diagnosed what has had happened is that i have got used to it and so has my family so unless im really bad we dont notice. we expect the bad days and look forward to the good days.
i think the most difficult thing that i have to deal with is other peoples opinions and i dont mean friends and family, as it is obvious most days that im not well. the people i meet with the
most prejudiced are those that are there to supposedly help and support us they look at you on a good day and say that you are fit to work not taking into account that i only one of those a fortnight! the drs that sit there and tell me i could get better but they dont know when or how long!
what i do know is that without a computer i would have been so much worse, the computer allows me to contact and chat with other people, it helps me to find the answers to my questions. the computer allows me to live a little more than i would be able to in the real world. it is not a replacement for the life that i had but it is a crutch that helps me cope with the life i now have!
having m.e is a roller coaster ride that gives you a few highs and some incredible lows it sets you up for fall after fall both physically and emotionally. the only problem is the other on the ride with you are not experiencing all of it! up down good or bad its not going away and i still dont have any answers!
however the difficulty is that to pace effectively you have to find your base line and if you are like me this means that you really cant do a lot! for my symptoms to remain at a constant level with no increase, my day would consist of a shower (sat on a bath board with a hand held shower), dressing, going downstairs on the stair lift walk to kitchen to get breakfast, return to lounge and rest for an hour, 20 mins reading/comp/tv, and hour resting, make lunch, an hour resting, 20 mins tv/comp/or craft. an hour rest. help to prepare evening meal sat on perch stool not more than 20mins, eat evening meal, go to bed rest one hour tv 30 mins rest then sleep.
at this level i have no increase in symptoms and eventually a decrease in my physical issues. but to do this sends me nutty. no wonder a lot of people with m.e get depression as well living like that is not living!
so do i do this every day, no i dont, i have a couple of days a week where i do this. the rest of the time i live a little each day. i do something that makes me feel like i am part of the world.
so i go out on my scooter, or pop to mum and dads for a bit, or watch a film, some times i make cards. these are the things that help me to carry on and stop going nutty. but they also cause me to yoyo and boom and bust a bit.
the problem is i have not worked out a way of pacing and living.
my symptoms have not reduces nor changed particularly in the 2 years since i was diagnosed what has had happened is that i have got used to it and so has my family so unless im really bad we dont notice. we expect the bad days and look forward to the good days.
i think the most difficult thing that i have to deal with is other peoples opinions and i dont mean friends and family, as it is obvious most days that im not well. the people i meet with the
most prejudiced are those that are there to supposedly help and support us they look at you on a good day and say that you are fit to work not taking into account that i only one of those a fortnight! the drs that sit there and tell me i could get better but they dont know when or how long!
what i do know is that without a computer i would have been so much worse, the computer allows me to contact and chat with other people, it helps me to find the answers to my questions. the computer allows me to live a little more than i would be able to in the real world. it is not a replacement for the life that i had but it is a crutch that helps me cope with the life i now have!
having m.e is a roller coaster ride that gives you a few highs and some incredible lows it sets you up for fall after fall both physically and emotionally. the only problem is the other on the ride with you are not experiencing all of it! up down good or bad its not going away and i still dont have any answers!
Wednesday 10 March 2010
today
this morning im so excited and cant wait for the day, how silly is that im 41 soon to be 42 and im behaving like a small child!
today is so exciting because this morning i am having coffee with another person with M.E (pwme) ans his wife and im meeting someone totally new who also has m.e. the reason for this is after we had finished out pacing class a few of us felt that it would be good to keep in touch and for a sort of informal support group we talked with the OT and she asked us if we mind if she forwarded our email to others that was Vera an me. and today i get to meet the first person who was referred to us. s originally Vee was coming today but as always life happens and she now cant make it. so im excited and nervous about that but in a good way.
then this afternoon my brother is home with his wife and little boy who i havent seen in over a year so im also very excited about that. they will be arriving this afternoon which will be fab. im looking forward to hopefully spending the day with them tomorrow.
the other thing that has got me so excited it that my new bedding came yesterday my new curtians are coming today and the children started painting my bedroom for me last night for mothers day they have got a 1/4 of it done and i love it already.
im so excited today that the pain doesnt even matter lol i just hope this happy feeling and excitement can carry me over the next few days so i can enjoy the time with my family.
today is so exciting because this morning i am having coffee with another person with M.E (pwme) ans his wife and im meeting someone totally new who also has m.e. the reason for this is after we had finished out pacing class a few of us felt that it would be good to keep in touch and for a sort of informal support group we talked with the OT and she asked us if we mind if she forwarded our email to others that was Vera an me. and today i get to meet the first person who was referred to us. s originally Vee was coming today but as always life happens and she now cant make it. so im excited and nervous about that but in a good way.
then this afternoon my brother is home with his wife and little boy who i havent seen in over a year so im also very excited about that. they will be arriving this afternoon which will be fab. im looking forward to hopefully spending the day with them tomorrow.
the other thing that has got me so excited it that my new bedding came yesterday my new curtians are coming today and the children started painting my bedroom for me last night for mothers day they have got a 1/4 of it done and i love it already.
im so excited today that the pain doesnt even matter lol i just hope this happy feeling and excitement can carry me over the next few days so i can enjoy the time with my family.
Sunday 7 March 2010
disbility in hiding
M.E/CFS and Fibromyalgia are among the diseases that create hidden disabilities. if you look at me sat in a chair i look fine no visible signs of illness the majority of the time.
but when i stand and start to walk its no longer hidden some days im quite good and only if you know me well would you see the tell tale signs but on others like today its obvious. to rise to standing is slow and labored my teeth gritted against the pain. each step is like watching a toddle learning to walk slow and fraught with danger, i wobble and stumble, the effort leaving me exhausted both mentally and physically.
most days to the out side world i cope i get up, get dressed, laugh and joke, what they dont see is what i hide not only from them but from myself deep inside hidden in a locked box is the fear that things could get worse, i no longer think in terms of getting back to normality and living a life like i used to. my ambition is to be able to keep house! something that most of us take for granted.
to day that locked box was opened for a short while as when i tried to stand this morning i could not, the pain was unbelievable even by the standards of what i normally cope with. i could not bend to dress and had to be helped by my hubby not something you really expect to have to happen when you get married and not a role that we were prepared for. the subtle change from partners in every thing to patient and carer. thank god for the stair lift or today i would have been trapped in my bed room not able to see the garden and appreciate the sun in the conservatory.
the reason that my disability is so hidden is that no one sees me, on days like this where basic things are hard i dont leave the house and visitors other than family are few. im not complaining or moaning but stating fact. i only leave the house on the days where i feel good, and even then most of the time its for very short periods.
i hide behind our front door not from choice but because the world is not designed to help me and others like me,
that doesn't mean i want everything to become accessible to me or that i feel excluded but the very fact that buildings have steps, paths have curbs, and my illness is not visible makes the world a place thats inaccessible with out help. my problem is independence and the lack of it available to me because of this god awful illness.my family are great but they like me are ignored by society at large and not helped. yes i am disabled yes i have a chronic devastating illness for which there is no cure. But unlike many other disabilities mine is ignored by many in the medical profession, in government and research. am i alone in having this illness no i share it with over 250,000 other people.
today i was reminded by my body how broken it really is. most days i can hide from this just as the rest of the world is able to ignore it. i hide so i can survive to fight another day, i hide so i can cope and help my family cope, i hide so i dont have to explain it to any one else. all of my reasons are to help me cope and carry on living.
what are your reasons for ignoring it? my disability is hidden because some people just cant be bothered to look, whats your excuse?
but when i stand and start to walk its no longer hidden some days im quite good and only if you know me well would you see the tell tale signs but on others like today its obvious. to rise to standing is slow and labored my teeth gritted against the pain. each step is like watching a toddle learning to walk slow and fraught with danger, i wobble and stumble, the effort leaving me exhausted both mentally and physically.
most days to the out side world i cope i get up, get dressed, laugh and joke, what they dont see is what i hide not only from them but from myself deep inside hidden in a locked box is the fear that things could get worse, i no longer think in terms of getting back to normality and living a life like i used to. my ambition is to be able to keep house! something that most of us take for granted.
to day that locked box was opened for a short while as when i tried to stand this morning i could not, the pain was unbelievable even by the standards of what i normally cope with. i could not bend to dress and had to be helped by my hubby not something you really expect to have to happen when you get married and not a role that we were prepared for. the subtle change from partners in every thing to patient and carer. thank god for the stair lift or today i would have been trapped in my bed room not able to see the garden and appreciate the sun in the conservatory.
the reason that my disability is so hidden is that no one sees me, on days like this where basic things are hard i dont leave the house and visitors other than family are few. im not complaining or moaning but stating fact. i only leave the house on the days where i feel good, and even then most of the time its for very short periods.
i hide behind our front door not from choice but because the world is not designed to help me and others like me,
that doesn't mean i want everything to become accessible to me or that i feel excluded but the very fact that buildings have steps, paths have curbs, and my illness is not visible makes the world a place thats inaccessible with out help. my problem is independence and the lack of it available to me because of this god awful illness.my family are great but they like me are ignored by society at large and not helped. yes i am disabled yes i have a chronic devastating illness for which there is no cure. But unlike many other disabilities mine is ignored by many in the medical profession, in government and research. am i alone in having this illness no i share it with over 250,000 other people.
today i was reminded by my body how broken it really is. most days i can hide from this just as the rest of the world is able to ignore it. i hide so i can survive to fight another day, i hide so i can cope and help my family cope, i hide so i dont have to explain it to any one else. all of my reasons are to help me cope and carry on living.
what are your reasons for ignoring it? my disability is hidden because some people just cant be bothered to look, whats your excuse?
Saturday 6 March 2010
what to do!
one of the hard things about having M.E is the amount of time in each day that you have to fill with
something thats not going to consume to much energy but will occupy you.
normal peoples days are taken up with work, house work, cooking and family. but my days are no longer filled with that because my body wont allow me to do these things.
finding things to do sitting down with my legs up has not been easy, for example i love to read but more than 20 minutes reading leaves me unable to concentrate on anything else for the rest of the day!
i love to paint but this has always been a hobby that i have done as and when i felt like it and not something that i can make myself do to fill the time as its something that just has to feel to happen and i tend to want to complete whatever it is and forget to rest!
i spend time on the computer but this is not something that i can spend all day every day doing though is is very easy to loose the day in chatting on line and browsing web sites, so i have been looking for things to do that i can pick up and put down as necessary so i can rest when needed with out messing up what im doing.
i have found my old cross stitch that got put in the back of the cupboard when i started studying and working full time. but this takes more concentration than you realize so like reading i cant do it for long.
i have decided to have a go at knitting again (not having done any since my kids we little) but forgot how much it makes your arms ache! although i have now got the rib of one side done!
then a competition came up on foggies the M.E website i use to win some card making stuff, never having done this before i entered and waited to see, low and behold i won a package arrived full of bits of paper and card little fabric flowers sequins and other shiny things i was drawn like a magpie to it all. this morning i have spent and hour happily cutting sticking and creating, (took me back to school and art class!) this morning has been glorious and i have completed and created cards something totally finished.
my hobbies pre M.E were more active as i like to walk and swim. i loved to cook this has not changed though more often than not i never complete a meal on my own any more. i used to read a whole novel in one go now a book lasts me weeks!
so to find something that i can complete on my own quickly and have fun doing has been so much fun this morning.
here is a pick of my creations.
something thats not going to consume to much energy but will occupy you.
normal peoples days are taken up with work, house work, cooking and family. but my days are no longer filled with that because my body wont allow me to do these things.
finding things to do sitting down with my legs up has not been easy, for example i love to read but more than 20 minutes reading leaves me unable to concentrate on anything else for the rest of the day!
i love to paint but this has always been a hobby that i have done as and when i felt like it and not something that i can make myself do to fill the time as its something that just has to feel to happen and i tend to want to complete whatever it is and forget to rest!
i spend time on the computer but this is not something that i can spend all day every day doing though is is very easy to loose the day in chatting on line and browsing web sites, so i have been looking for things to do that i can pick up and put down as necessary so i can rest when needed with out messing up what im doing.
i have found my old cross stitch that got put in the back of the cupboard when i started studying and working full time. but this takes more concentration than you realize so like reading i cant do it for long.
i have decided to have a go at knitting again (not having done any since my kids we little) but forgot how much it makes your arms ache! although i have now got the rib of one side done!
then a competition came up on foggies the M.E website i use to win some card making stuff, never having done this before i entered and waited to see, low and behold i won a package arrived full of bits of paper and card little fabric flowers sequins and other shiny things i was drawn like a magpie to it all. this morning i have spent and hour happily cutting sticking and creating, (took me back to school and art class!) this morning has been glorious and i have completed and created cards something totally finished.
my hobbies pre M.E were more active as i like to walk and swim. i loved to cook this has not changed though more often than not i never complete a meal on my own any more. i used to read a whole novel in one go now a book lasts me weeks!
so to find something that i can complete on my own quickly and have fun doing has been so much fun this morning.
here is a pick of my creations.
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