I felt very low after this last hospital appointment as felt was basically told you have tried everything and there is nothing left to try. Had a big bout of crying when I got home as felt totally hopeless which is not how I usually feel. Was very tired from the journey to the hospital on the tube and felt that it was a waste of time. I try hard to go for acceptance with hope for the future, but have had such a low few weeks spent mostly in bed that had a hard time keeping myself up.
Within a few days had talked myself round to feeling better as
a) need to keep in touch with hospital for when something new does come along and also for support for DLA if nothing else.
b)Will explore trying to go to private clinic in January if Benenden will pay for it.
c)Went out with some friends for evening, didn't feel like going but felt better when I went as they are very cheery people- so thanks Diane, Phillipa, Sarah,Lisa and Fiona.
d) am no worse off than before I went, am always worse in winter and it will pass soon enough and I will feel better.
Showing posts with label help from others. Show all posts
Showing posts with label help from others. Show all posts
Friday, 18 December 2009
Monday, 3 August 2009
CFIDS Monthly topic- Resting at Work
I am not working now but when I was I had a camping lounger that I used to rest at lunchtime and plugged in my trusty ipod to listen to meditation or sometimes EFT for resting and energy.Unfortunately I was made to take this home by a new manager.I had however also had an ergonomic assessment done of my desk and workplace and had a really comfy chair that gave support to my neck and footstools to minimize pain in legs.Also we should remember that there are laws in place - I know not always adhered to- that adjustments should be made to accommodate disabilities at work.It took me a long time to admit that FM is a disability and ask for help for rest times during the day, late starts or whatever will help you.I have just been to a restaurant with my family and take a tempur cushion with me to minimize discomfort- if you can do that you can stay longer I think.If I am not am home and need a rest I am no longer afraid to say I need to rest for a while am off for a nap lie down see you later.not posted for a while as have been at our house in Turkey I am so proud of myself for buying this without my husband and he is delighted with it.I have also told anyone that wants to visit they are all welcome but I am not going to look after anyone. I also have made a self contained area in this house with own bathroom sitting room and food available so I can really rest if I need to.My health was much improved in Turkey less stress, swimming each day and warm sunshinekind regardsLinda
Thursday, 11 June 2009
Becoming More Decisive
I think I have become much more decisive since having fibromyalgia.
I used to worry a lot about making the right decision and would be awake at night worrying about anything and everything but it has taken a while to get to this place where I try not to worry about things I can nothing about.
If something is fairly unimportant I make the decision and move on- like what to eat in a restaurant or to have for dinner- its a waste of energy for me and you. although I draw the line at swapping my meal with my husband if I didn't like it like my mother -in-law did long ago when presented with a whole fish. She just simply gave it to her husband and enjoyed his lamb chops.
When I was in Turkey buying furniture I realised I was much less fussy about things than my sister if it looked fine was comfortable and did the job I said yes. Although it was good to have her with me for dealing with snags with workmen wheras I would have just let them go to preserve my energy, she was quite happy to go and deal with little problems so I guess sometimes I am delegating decisions to others if they are unimportant to me.
At the same time I do like to be included in decision making that effects me for instance it was nice to have my bathroom painted but I really don't like green and it would have been nice to have been asked what colour I would like. Again this is not major and I can live with it.
I think using target setting has contributed to my becoming more decisive because I set a target break it down into small steps and then achieve it- which is how we now have our lovely house in Turkey. I do say to my husband be careful what you wish for !!! If I set it as a target it will happen.
Its much less tring to be decisive and so far nothing really bad has happened because of it apart from buying a wardrobe that is a bit too big for Turkey- small thing.
I used to worry a lot about making the right decision and would be awake at night worrying about anything and everything but it has taken a while to get to this place where I try not to worry about things I can nothing about.
If something is fairly unimportant I make the decision and move on- like what to eat in a restaurant or to have for dinner- its a waste of energy for me and you. although I draw the line at swapping my meal with my husband if I didn't like it like my mother -in-law did long ago when presented with a whole fish. She just simply gave it to her husband and enjoyed his lamb chops.
When I was in Turkey buying furniture I realised I was much less fussy about things than my sister if it looked fine was comfortable and did the job I said yes. Although it was good to have her with me for dealing with snags with workmen wheras I would have just let them go to preserve my energy, she was quite happy to go and deal with little problems so I guess sometimes I am delegating decisions to others if they are unimportant to me.
At the same time I do like to be included in decision making that effects me for instance it was nice to have my bathroom painted but I really don't like green and it would have been nice to have been asked what colour I would like. Again this is not major and I can live with it.
I think using target setting has contributed to my becoming more decisive because I set a target break it down into small steps and then achieve it- which is how we now have our lovely house in Turkey. I do say to my husband be careful what you wish for !!! If I set it as a target it will happen.
Its much less tring to be decisive and so far nothing really bad has happened because of it apart from buying a wardrobe that is a bit too big for Turkey- small thing.
Wednesday, 27 May 2009
Wise Words- Notes to Self
I keep some notes to remind me not to be too hard on other people when they appear sometimes to be insensitive. I keep them as notes on my mobile phone so I remember to have a quick look if I am a bit down or getting cross with people.
When people say "you look good/well" it is becasue they want you to be better and it is kindly mean't.
You make a lot of effort to look good so take it as a compliment.
Phillipa Jones- Arthritis Care Trainer
If I was being kind to myself what would I be doing right now? What do I really need? Don't forget tapping (Emotional Freedom Technique)
I love you but I have to take care of me so I can have energy to take care of you
Other people have wants, but you have needs
Joyce Spence- my very good friend
Every day do something just to make yourself happy you have to have fun in your life
CBT counsellor
You always had it in you, you always had the power
The Wizard of Oz
Joyce Spence- my very good friend
When people say "you look good/well" it is becasue they want you to be better and it is kindly mean't.
You make a lot of effort to look good so take it as a compliment.
Phillipa Jones- Arthritis Care Trainer
If I was being kind to myself what would I be doing right now? What do I really need? Don't forget tapping (Emotional Freedom Technique)
I love you but I have to take care of me so I can have energy to take care of you
Other people have wants, but you have needs
Joyce Spence- my very good friend
Every day do something just to make yourself happy you have to have fun in your life
CBT counsellor
You always had it in you, you always had the power
The Wizard of Oz
Joyce Spence- my very good friend
Sunday, 24 May 2009
What I Know Now Because of Fibromyalgia
How much I am loved
It's OK to say no
There is value in looking on listening not always being in the thick of it.
There is pleasure to be has in being quiet not always being the one to entertain.
I enjoy time on my own quiet time.
Life can be good and enjoyable despite illness you can be happy.
It's OK to put yourself first.#If you want or need something you need to ask - people are not mind-readers.
I do more now because of my illness - I don't want to waste the good days.
When you go slower you notice different things to people who are rushing around- litle snails in the road, knots on trees, flowers that are slightly hidden from view- unless you are going slow.
It's OK to say no
There is value in looking on listening not always being in the thick of it.
There is pleasure to be has in being quiet not always being the one to entertain.
I enjoy time on my own quiet time.
Life can be good and enjoyable despite illness you can be happy.
It's OK to put yourself first.#If you want or need something you need to ask - people are not mind-readers.
I do more now because of my illness - I don't want to waste the good days.
When you go slower you notice different things to people who are rushing around- litle snails in the road, knots on trees, flowers that are slightly hidden from view- unless you are going slow.
Monday, 11 May 2009
Flare up -it was expected
I knew it would happen and after spending a week sitting at the hospital trying to offer support it all caught up with me last Friday and I had no choice but to go to bed and stay there.
Even though I knew it would happen it was very hard to cope with the feelings of being useless because of this damn illness but you just have to get yourself over that or it will only bring you down more.
The pain and tiredness have been intense but luckily my DH has noticed and made sure I rested well he ordered me home and to bed. He has been bringing me breakfast in bed complete with tablets and coming home lunchtime to make me lunch if he can.
On top of it all by trying to run into the hospital I seem to now also have plantar fasciaitus which is very painful and has meant I have had to use a stick for the last few days which i find quite cumbersome and heavy to use. The only treatment is the medication I am already taking so am just resting being kind to myself. I think I did a good job while I could and am trying to help out as much as I can but not so much hands on. Just allowing other people who have more energy to help instead of me.
Taking care of myself first now like on an aeroplane you can't look after others until you look after yourself.
Be gentle to yourseves if you need it love and gentle hugs
Even though I knew it would happen it was very hard to cope with the feelings of being useless because of this damn illness but you just have to get yourself over that or it will only bring you down more.
The pain and tiredness have been intense but luckily my DH has noticed and made sure I rested well he ordered me home and to bed. He has been bringing me breakfast in bed complete with tablets and coming home lunchtime to make me lunch if he can.
On top of it all by trying to run into the hospital I seem to now also have plantar fasciaitus which is very painful and has meant I have had to use a stick for the last few days which i find quite cumbersome and heavy to use. The only treatment is the medication I am already taking so am just resting being kind to myself. I think I did a good job while I could and am trying to help out as much as I can but not so much hands on. Just allowing other people who have more energy to help instead of me.
Taking care of myself first now like on an aeroplane you can't look after others until you look after yourself.
Be gentle to yourseves if you need it love and gentle hugs
Friday, 3 April 2009
Letter To Normals -I'm not sure about it?
When I was first diagnosed with fibro I think I quite liked this letter.
I wanted to make the world and everyone I met understand what it was like for me, how much I was suffering, how bad I felt. But now I think I don't really care what others think other than those that are close to me.
If friends are lost then how good a friend were they in the first place?
If people think I look good or I am getting better then does it really matter?
Those close to you want you to be well and happy does it help in any way if they truly know what your life is like?
I don't like to talk to about myself as someone who is suffering who has demons I don't think of it as helpful self talk.
I think I prefer the spoon story but I reproduce it here for you to decide for yourself, some of it is good but I don't know what do you think?
Maybe the thing is to use it to start one of your own.
The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed.
And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless.
My pain works silently, stealing my joy and replacing it with tears.
On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating.
And in many ways my pain may be more destructive because people can’t see it and do not understand.... Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you.
My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy.
I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled.
When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something.
Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal.
Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn.
Please try to understand…. Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably.
I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week.
I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably.
And there are those who say “but you did that yesterday!” “What is your problem today?”
The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit.
I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask?
I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways.
Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different.
I too have hopes, dreams, goals… and this demon….
Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees?
I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that.
But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.
Please understand…. Thank you for spending your time with me today. I hope we can work through this thing, you and I.
Please understand that I am just like you… Please understand….
Copyright of www.fibrohugs.com Written by Ronald J. Waller
I wanted to make the world and everyone I met understand what it was like for me, how much I was suffering, how bad I felt. But now I think I don't really care what others think other than those that are close to me.
If friends are lost then how good a friend were they in the first place?
If people think I look good or I am getting better then does it really matter?
Those close to you want you to be well and happy does it help in any way if they truly know what your life is like?
I don't like to talk to about myself as someone who is suffering who has demons I don't think of it as helpful self talk.
I think I prefer the spoon story but I reproduce it here for you to decide for yourself, some of it is good but I don't know what do you think?
Maybe the thing is to use it to start one of your own.
The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed.
And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless.
My pain works silently, stealing my joy and replacing it with tears.
On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating.
And in many ways my pain may be more destructive because people can’t see it and do not understand.... Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you.
My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy.
I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled.
When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something.
Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal.
Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn.
Please try to understand…. Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably.
I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week.
I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably.
And there are those who say “but you did that yesterday!” “What is your problem today?”
The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit.
I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask?
I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways.
Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different.
I too have hopes, dreams, goals… and this demon….
Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees?
I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that.
But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.
Please understand…. Thank you for spending your time with me today. I hope we can work through this thing, you and I.
Please understand that I am just like you… Please understand….
Copyright of www.fibrohugs.com Written by Ronald J. Waller
Saturday, 28 March 2009
Spoon Story
I wonder do you know the spoon story? it was written by Christine Miserandino from http://butyoudontlooksick.com/ and I find it really useful to explain the limits to my energy on a daily basis.
When I first read it I was really excited about it and sent it to lots of friends and family but was disappointed by the lack of response from soem people but others really got it.
My young daughter will often say to me-now Mum that's is too many spoons and my good friend will say- have you got any spoons today, do you want to go out?
She even sent me a lovely picture of spoons which I would like to reproduce as I lost it from my phone, think I will do this for one of my photos on my 101 list
Here's a link to the story I hope you enjoy it:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
When I first read it I was really excited about it and sent it to lots of friends and family but was disappointed by the lack of response from soem people but others really got it.
My young daughter will often say to me-now Mum that's is too many spoons and my good friend will say- have you got any spoons today, do you want to go out?
She even sent me a lovely picture of spoons which I would like to reproduce as I lost it from my phone, think I will do this for one of my photos on my 101 list
Here's a link to the story I hope you enjoy it:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Sunday, 22 March 2009
Going to Parties and Other Ocassions
Yesterday was my Mum's 95th birthday so a party has been planned for ages for it. I went yesterday and had a really good time but just think its useful to think about how to plan foir these life events that come up and enjoy them.
I haven't been too good for a few days and have been wondering if worrying about going has contributed to this?
So I think the best idea is to look on it as a problem solving exercise you know you want to go so how best to go, get the best out of it and minimise any possible flare-up afterwards.
So plan the event:
How long will you stay? Try to decide this before hand so you know and can pace yourself, if you have a partner they can remind you when it is time to go.
Can you go earlier and rest somewhere beforehand? if not can someone else drive and you lie down in the back of the car to maximise rest.
What will you wear- I start with heels and take flats and try to go with comfort and style not always easy. Although I got the most compliments one party where I was feeling very poorly and threw on a tried and trusted outfit so maybe I have mastered effortless style.
In the day or days before you go depending on your energy levels make sure you gets lots of rest look after yourself maybe do a bit of pampering while you are relaxing so you have your nails done etc before the event.
At our family parties people usually chip in with cooking or preparing but I usually just send a donation for two reasons- its much easier if I don't have the added stress of a job to do on the day and if I can't go then no-one is waitng for the all inportant puds or sonething.
What do you want to get out of it? I just mean how best to enjoy it without wearing yourself out.
We are known as the dancing aunties at our family parties although it has just dawned on me we have now become the dancing grannies. But dancing although I love it has become much harder for me to do so I have mastered the art of dancing without moving my feet and if you can find a handy wall to lean on at the same time all the better.
Let go of other peoples expectations of you? If you always did all the cooking or were the entertainer them maybe you can't do that any more so you will need to delegate and let go of your past role in life.
I used to be the first one to dance and was asked to get up to dance last night but thats not really me any more although I did do it becuase its not so easy for me to do and I miss it badly but of course while I was dancing I was missing out on all the gossip so theres my compensation for that.
Whatever you are going to or planning to go to-- ENJOY
I haven't been too good for a few days and have been wondering if worrying about going has contributed to this?
So I think the best idea is to look on it as a problem solving exercise you know you want to go so how best to go, get the best out of it and minimise any possible flare-up afterwards.
So plan the event:
How long will you stay? Try to decide this before hand so you know and can pace yourself, if you have a partner they can remind you when it is time to go.
Can you go earlier and rest somewhere beforehand? if not can someone else drive and you lie down in the back of the car to maximise rest.
What will you wear- I start with heels and take flats and try to go with comfort and style not always easy. Although I got the most compliments one party where I was feeling very poorly and threw on a tried and trusted outfit so maybe I have mastered effortless style.
In the day or days before you go depending on your energy levels make sure you gets lots of rest look after yourself maybe do a bit of pampering while you are relaxing so you have your nails done etc before the event.
At our family parties people usually chip in with cooking or preparing but I usually just send a donation for two reasons- its much easier if I don't have the added stress of a job to do on the day and if I can't go then no-one is waitng for the all inportant puds or sonething.
What do you want to get out of it? I just mean how best to enjoy it without wearing yourself out.
We are known as the dancing aunties at our family parties although it has just dawned on me we have now become the dancing grannies. But dancing although I love it has become much harder for me to do so I have mastered the art of dancing without moving my feet and if you can find a handy wall to lean on at the same time all the better.
Let go of other peoples expectations of you? If you always did all the cooking or were the entertainer them maybe you can't do that any more so you will need to delegate and let go of your past role in life.
I used to be the first one to dance and was asked to get up to dance last night but thats not really me any more although I did do it becuase its not so easy for me to do and I miss it badly but of course while I was dancing I was missing out on all the gossip so theres my compensation for that.
Whatever you are going to or planning to go to-- ENJOY
Monday, 16 March 2009
Dreaded DLA Form
I decided that today is the day to tackle this form it is 39 pages long so have broken it down to pages in my trusty notebook.
It took me some time to assemble all my paperwork together so I have:
1 current prescription forms saves writing in what meds you are taking
2 medical history document-This is my own document with family history, own medical history 3 medications tried, treatements tried etc. I try to update this and keep it on my computer but it needed updating before I could use it.
4 copies of old DLA applications- so I can see what I put before not that that means if it worked that time it will this.
5 Any Medical reports to send up the more info the better
6 Letters from people that care for you- my husband, daughter and friend
7 Guide to Disabilty Living Allowancw frim Bebefits and Work website- printed off- this is a page by page guide and is invaluable for helping complete this horror of a form.
So am ready now and have completed 13 pages- admitedly these are mostly the easiest ones- like whats your name and bank details but that is a third of the way along right.
Have had a break during this and sat in my summer house for a while with the paper, what a beautiful sunny day it has been today.
Am going to pack up now and tackle some more of it tomorrow. But am I also going to reward myself with buying some bedding plants for my garden. This form can really make you feel down as you have to talk about suffering and pain and all the symptoms you have- words I try not to use about myself too much. Am exhausted from it but it has been productive.
It took me some time to assemble all my paperwork together so I have:
1 current prescription forms saves writing in what meds you are taking
2 medical history document-This is my own document with family history, own medical history 3 medications tried, treatements tried etc. I try to update this and keep it on my computer but it needed updating before I could use it.
4 copies of old DLA applications- so I can see what I put before not that that means if it worked that time it will this.
5 Any Medical reports to send up the more info the better
6 Letters from people that care for you- my husband, daughter and friend
7 Guide to Disabilty Living Allowancw frim Bebefits and Work website- printed off- this is a page by page guide and is invaluable for helping complete this horror of a form.
So am ready now and have completed 13 pages- admitedly these are mostly the easiest ones- like whats your name and bank details but that is a third of the way along right.
Have had a break during this and sat in my summer house for a while with the paper, what a beautiful sunny day it has been today.
Am going to pack up now and tackle some more of it tomorrow. But am I also going to reward myself with buying some bedding plants for my garden. This form can really make you feel down as you have to talk about suffering and pain and all the symptoms you have- words I try not to use about myself too much. Am exhausted from it but it has been productive.
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.
Subscribe to:
Posts (Atom)
