I made a decision not too long ago really that if I can't be healthy I am going to be happy.
The first time I ever went to counselling for Cognitive Behaviour Therapy I was told that I did not do enough things during the day for fun.
. It was all work or family responsibliites so the first thing I had to do was think about ways of having fun. Every day now I think about what I am going to do for fun or happiness that day.
Of course that really depends on how I feel on any given day and plans are sometimes changed at the last minute but I like to have things to look forward to so I plan lunch with a friend, an early drink with my husband a holiday or outing.
If it happens that the day is one spent in bed then I watch a happy DVD have a facial, paint my nails anything to keep my mood up or using the trusty notebook plan future outings or speak to a friend or sister on the phone
. Its not easy to keep yourself "up" but the alternative is inconceivable my talk to myself is uplifting I hope yours is too so tell me:
What are going to do today for fun?
Saturday, 14 March 2009
Flare-Ups
Had a terrible night Wednesday night couldn't sleep for pain in face had taken all medication possible and then just got up to come downstairs to be alone to pace.
Felt very bad and not consciencly deciding just trying to report how I dealt with it. Not saying this is a good way but only what happened. Had a good cry for ten or so minutes and a bit of a rant poor me, why me why won't it stop to myself. Then I gave my nose a good blow told myself to STOP put on the telly and a heating pack for my face and laid down on the sofa with the dog for a while. Paced up and down for a while telling myself well you've had this before you managed. It will go away had a play on my ipod still can't get good score made a cup of decaf tea and waited for next time tablets due. Eventually dozed off on sofa.
Then I went back to bed reviewed available tablets decided to have breakfast and then take tablets that I know will make me sleep.
When feel better think about is this a new pain? is it dental? do I need to see doctor?
Have had quite a few bad days in a row so will think about logging days to see if can work out cause but also accept there may be no cause. But am glad that day is over
Felt very bad and not consciencly deciding just trying to report how I dealt with it. Not saying this is a good way but only what happened. Had a good cry for ten or so minutes and a bit of a rant poor me, why me why won't it stop to myself. Then I gave my nose a good blow told myself to STOP put on the telly and a heating pack for my face and laid down on the sofa with the dog for a while. Paced up and down for a while telling myself well you've had this before you managed. It will go away had a play on my ipod still can't get good score made a cup of decaf tea and waited for next time tablets due. Eventually dozed off on sofa.
Then I went back to bed reviewed available tablets decided to have breakfast and then take tablets that I know will make me sleep.
When feel better think about is this a new pain? is it dental? do I need to see doctor?
Have had quite a few bad days in a row so will think about logging days to see if can work out cause but also accept there may be no cause. But am glad that day is over
Tuesday, 10 March 2009
Talking to Medics
Yesterday I had an appointment with a new consultant at Guys Hospital. I had been seeing Professor Davies who is the leading expert in Fibromyalgia ie the only one that seems interested. I am noe seeing his Registrar Dr Aslam. So after a mix up with my appointment which meant I was a month behind I arrived with some trepidation as always when seeing someone new. Will they understand will they give me time to answer will they listen?
The only way I can deal with appointments is to be as prepared as I can be with my trusty notebook in hand with a short overview of where I am now how I feel, what my symptoms are what medication I am taking together with a typed history of my condition with medication tried together with a bit of family hostory in case asked for this to refer to if needed. Ideally it would have been useful to have a diary of my last week but I just find that too depressing to write so I didn't have it with me. Mu history of conditon wasn't quite up yo date but it was good enough to answer a querie that the doc had about an effect a previous medication had had, will update it soon.
I like to have it all written down for two reasons so I don't forget a question that is worrying me and also in case I get a fibrofog moment which did happen to me before and can't say properly what is wrong then at least I can point feebly at the relevant question. If you do have a lot of fibro fog I would advise taking someone with you that knows you well to help out if you get stuck.
All in all it was a good meeting am being snet on a residentail pain management course depite my having tried many courses before and some new medication which I have to try with quarter tablet then half then three quarters to whole so I don't get too many side effects. Can't remember name of it- should have written it down in trusty notebook= but know have not heard of it so probably experiwmntal for us guinea pigs oink oink
The only way I can deal with appointments is to be as prepared as I can be with my trusty notebook in hand with a short overview of where I am now how I feel, what my symptoms are what medication I am taking together with a typed history of my condition with medication tried together with a bit of family hostory in case asked for this to refer to if needed. Ideally it would have been useful to have a diary of my last week but I just find that too depressing to write so I didn't have it with me. Mu history of conditon wasn't quite up yo date but it was good enough to answer a querie that the doc had about an effect a previous medication had had, will update it soon.
I like to have it all written down for two reasons so I don't forget a question that is worrying me and also in case I get a fibrofog moment which did happen to me before and can't say properly what is wrong then at least I can point feebly at the relevant question. If you do have a lot of fibro fog I would advise taking someone with you that knows you well to help out if you get stuck.
All in all it was a good meeting am being snet on a residentail pain management course depite my having tried many courses before and some new medication which I have to try with quarter tablet then half then three quarters to whole so I don't get too many side effects. Can't remember name of it- should have written it down in trusty notebook= but know have not heard of it so probably experiwmntal for us guinea pigs oink oink
Friday, 6 March 2009
Asking For Help- Again and Again
Am now on my third day in bed am coping Ok with it but it brings me to this dilema. Having to rely on others to help you by bringing you refreshments, medication, water or other things because you either just cannot get out of bed because you are just too tired or have got a bit low and bed is the only place you are comfortable.
I sometimes feel like Miss Haversham shut away in the attic with no visitors the worst being knowing there are people in the house and they don't come near or by you. Maybe you don't have this problem but its hard to have to keep asking for help without feeling like you are whining or getting cross. I don't really know the answer to this one tried to bring up what I need myself and think about having another talk with offspring about needs. I guess they don't like to think that you are poorly and would rather close their eyes to the fact and think you are just having a lazy day in bed.
I think it is because the nature of the illness is to be invisible so you don't look sick and in the main you behave as if you are not sick so it seems to come as a surprise that you might need help after all you are the Mum.
Tomorrow will be better will try to get up and go out.
I sometimes feel like Miss Haversham shut away in the attic with no visitors the worst being knowing there are people in the house and they don't come near or by you. Maybe you don't have this problem but its hard to have to keep asking for help without feeling like you are whining or getting cross. I don't really know the answer to this one tried to bring up what I need myself and think about having another talk with offspring about needs. I guess they don't like to think that you are poorly and would rather close their eyes to the fact and think you are just having a lazy day in bed.
I think it is because the nature of the illness is to be invisible so you don't look sick and in the main you behave as if you are not sick so it seems to come as a surprise that you might need help after all you are the Mum.
Tomorrow will be better will try to get up and go out.
Duvet Days
Have just had a day in bed yesterday where although wanted to get up just couldn't from fatigue and pain so settled down for a day in bed.
I try hard- not always successfully- to keep my bedroom a haven where I am as comfortable as possible and have things around me to amuse and entertain me.
I have pretty PJ's or put on comfy tracksuit have plenty of water and few snacks to keep me going in case no-one around to bring me any.
Unless it is a day where I know that sleep is the only thing to do I open the curtains so I can look out at the trees in the park behind my house.
I have a kind of toolbox as recommended on http://www.painsupport.co.uk/ps_home.html.
Anything I think will make the time pass in as happy a way possible:
Happy DVD's, My Ipod and Nintendo DS for listening to music, podcasts or playing games, my notebook for jotting down ideas, my lists of plans for the future.
I might ring someone if I feel up to it or text if I don't just to make contact with the outside world. I might go on my laptop if I feel up to it to pass a bit of time send emails, look up things that interest me. I also like to write a few cards or letters but sometimes am not in the right frame of mind for this.
I had a lovely day once when my daughter joined me and we had a beauty day. Doing each others nails, having a facial and meditating. So I might do this on my own if no-one around.
I do like to have visitors and leave my door open for that but I don't always get them and sometimes feel like the mad auntie locked away in the attic. It is hard if there are too many of these days but I try not to let myself get stir crazy and stop myself from having too many negative thoughts. I've had days like these before, I've coped with them and I will get over them. What do you do to cope with duvet days
I try hard- not always successfully- to keep my bedroom a haven where I am as comfortable as possible and have things around me to amuse and entertain me.
I have pretty PJ's or put on comfy tracksuit have plenty of water and few snacks to keep me going in case no-one around to bring me any.
Unless it is a day where I know that sleep is the only thing to do I open the curtains so I can look out at the trees in the park behind my house.
I have a kind of toolbox as recommended on http://www.painsupport.co.uk/ps_home.html.
Anything I think will make the time pass in as happy a way possible:
Happy DVD's, My Ipod and Nintendo DS for listening to music, podcasts or playing games, my notebook for jotting down ideas, my lists of plans for the future.
I might ring someone if I feel up to it or text if I don't just to make contact with the outside world. I might go on my laptop if I feel up to it to pass a bit of time send emails, look up things that interest me. I also like to write a few cards or letters but sometimes am not in the right frame of mind for this.
I had a lovely day once when my daughter joined me and we had a beauty day. Doing each others nails, having a facial and meditating. So I might do this on my own if no-one around.
I do like to have visitors and leave my door open for that but I don't always get them and sometimes feel like the mad auntie locked away in the attic. It is hard if there are too many of these days but I try not to let myself get stir crazy and stop myself from having too many negative thoughts. I've had days like these before, I've coped with them and I will get over them. What do you do to cope with duvet days
Wednesday, 4 March 2009
CFIDS Online Support Group-Loneliness
I am including the following transcript of my email response for my online support group with CFIDS. http://www.cfidsselfhelp.org/
We have a topic each month some suggested by members and each person can post about how it affects them and what they do that helps.
This has been such an invaluable support to me over the last few years knowing there are people around that understand that you can reach out to you can ask a question, email an individual if you want and gain insights into how other people cope. First I did an online course where I was taught coping strategies and target setting and then I became part of this alumni group ( I have no idea how you say alumni but anyway thats the group I'm in)
So heres my post:
Hi everyone and welcome to our new members
। I think the worse bit of loneliness is that of not knowing people around that you can talk to about fibro but this group makes a big diffference to feelings of isolation.
When I have had to have yet another day in bed and no one around during the day then I do get a bit low but Itry to connect with people either by phone text or internet.
Thankfully my husband bought a laptop for us to use recently which is wonderful for keeping in touch with people online chatting on MSN or emailing from my bed.
I also like to try and write some letters with snail mail as its lovely to post and then receive letters and cards in the post.
kind regards Linda
We have a topic each month some suggested by members and each person can post about how it affects them and what they do that helps.
This has been such an invaluable support to me over the last few years knowing there are people around that understand that you can reach out to you can ask a question, email an individual if you want and gain insights into how other people cope. First I did an online course where I was taught coping strategies and target setting and then I became part of this alumni group ( I have no idea how you say alumni but anyway thats the group I'm in)
So heres my post:
Hi everyone and welcome to our new members
। I think the worse bit of loneliness is that of not knowing people around that you can talk to about fibro but this group makes a big diffference to feelings of isolation.
When I have had to have yet another day in bed and no one around during the day then I do get a bit low but Itry to connect with people either by phone text or internet.
Thankfully my husband bought a laptop for us to use recently which is wonderful for keeping in touch with people online chatting on MSN or emailing from my bed.
I also like to try and write some letters with snail mail as its lovely to post and then receive letters and cards in the post.
kind regards Linda
Monday, 2 March 2009
Holidaying with fibromyalgia
Have just had a lovely few days away with my husband in Kent, but not too long ago the thought of travelling anywhere would have filled me with dread. Would I be able to cope with the travelling? Would the room and bed be comfy? Would it be boring for D when I can't join in because of pain or tiredness?
But now I look forward to our times away because like a good boy scout I make sure I am well prepared for the journey and the increased activity when away from home.
Its all in the planning about a week before I will start thinking about and getting together anything I think will make my holiday more enjoyable:
heating pad, enough medication, ipod, magazines, Nintendo DS, notebook, pain machine (Remedi pain device) and good beer guide for nice pubs.
I will try to research the area we are going to for things to do and places to visit checking out disabled facilities if I think I need them. I used to feel embarassed about asking for wheelchair assistance or concessions but now I just ask. The problem is one of not looking disabled but we had a really good experience at Leeds Castle in Kent offering disabled concession- free carer, land train up to castle, entrance through front door instead of down steps and wheelchair if needed.
Some other places have made me feel a bit like i am trying it on and was once given an enormously wide wheelchair I think because they thought the disabled person was in the car- I hope that is the reason anyway. When we went to Cornwall it was the first time of using a wheelchair and I cried the first time beause it is just admitting you need it but D convinced me it was better to use it and be together than him look around the gardens and me waiting in the coffee shop. D had to get used to it too as he kept abandoning me in various places while he went to look at plants and the like.
At the Eden project I used an electric wheelchair which was great apart from my lack of driving skills as I ended up managing to climb up a tree trunk in it until D came and rescued me. It was handy though when it started to rain as I could just speed off under cover and leave D to get wet.
The most inportant thing to take away is enough medication- I also have a letter from my doctor stating that my medication is on prescription and would check the country I am going to in case they have any rules about what medications are allowed. I always take them in their original boxes maybe being a bit paraniod but better not to have any worries.
Strangley enough had wierd reaction to sheets at hotel in Kent sneezing and itching every night so now will have to add own bedding to list. I have now bought a travel tempur matress but forgot to take it!!! In the past if the bed is too hard I have used any extra bedding in the accomodation to pad the mattress like blankets or spare quilts to make it more comfy.
If your journey has been long don't forget to allow time to recover- I didn't do that last year when we had flight delays and an awful journey and wasn't right for a good few days after arrival when I would have been better to have rested completely the first day and left D to his own devices.
I find that any holiday means spending some time apart but we are used to it now and will decide to go out during the day or in the evening or David might go for a walk while I rest or do somethng less taxing.
We even took a Dvd player with us this trip in case there wasn't one in the room and watched a nightly episode of "The Prisoner" together.
But now I look forward to our times away because like a good boy scout I make sure I am well prepared for the journey and the increased activity when away from home.
Its all in the planning about a week before I will start thinking about and getting together anything I think will make my holiday more enjoyable:
heating pad, enough medication, ipod, magazines, Nintendo DS, notebook, pain machine (Remedi pain device) and good beer guide for nice pubs.
I will try to research the area we are going to for things to do and places to visit checking out disabled facilities if I think I need them. I used to feel embarassed about asking for wheelchair assistance or concessions but now I just ask. The problem is one of not looking disabled but we had a really good experience at Leeds Castle in Kent offering disabled concession- free carer, land train up to castle, entrance through front door instead of down steps and wheelchair if needed.
Some other places have made me feel a bit like i am trying it on and was once given an enormously wide wheelchair I think because they thought the disabled person was in the car- I hope that is the reason anyway. When we went to Cornwall it was the first time of using a wheelchair and I cried the first time beause it is just admitting you need it but D convinced me it was better to use it and be together than him look around the gardens and me waiting in the coffee shop. D had to get used to it too as he kept abandoning me in various places while he went to look at plants and the like.
At the Eden project I used an electric wheelchair which was great apart from my lack of driving skills as I ended up managing to climb up a tree trunk in it until D came and rescued me. It was handy though when it started to rain as I could just speed off under cover and leave D to get wet.
The most inportant thing to take away is enough medication- I also have a letter from my doctor stating that my medication is on prescription and would check the country I am going to in case they have any rules about what medications are allowed. I always take them in their original boxes maybe being a bit paraniod but better not to have any worries.
Strangley enough had wierd reaction to sheets at hotel in Kent sneezing and itching every night so now will have to add own bedding to list. I have now bought a travel tempur matress but forgot to take it!!! In the past if the bed is too hard I have used any extra bedding in the accomodation to pad the mattress like blankets or spare quilts to make it more comfy.
If your journey has been long don't forget to allow time to recover- I didn't do that last year when we had flight delays and an awful journey and wasn't right for a good few days after arrival when I would have been better to have rested completely the first day and left D to his own devices.
I find that any holiday means spending some time apart but we are used to it now and will decide to go out during the day or in the evening or David might go for a walk while I rest or do somethng less taxing.
We even took a Dvd player with us this trip in case there wasn't one in the room and watched a nightly episode of "The Prisoner" together.
Subscribe to:
Posts (Atom)
