After being given the frame for a week i continued to fall.. 11 times continuing to cover myself in bruises, i feel like i am turning myself into some kind of strange form of bruised artwork but the bruises are mainly on my arms and legs so clothes keep them covered so people cant see them.
I saw the physiotherapist again who was concerned that i was still falling but suggested that i continue using the frame at home where possible. She also contacted the "Fall Prevention Team" at the local hospital who are coming out to see me later next week.. Apparently the come and assess your home and suggest things to help. The physio also told me that i will need to use a wheelchair outside when i get tired otherwise i will fall and possibly break something i have to wait to see the Occupational Therapist. The FPT should be able to push me forward alittle in the queue hopefully.
She also advised me that because of the nature of Fibromyalgia with fatigue and the way it effects joints and muscles that she thought physiotherapy wouldnt really help me at the moment and has discharged me at the moment.
I still havent gotten my disabled space outside our block of flats, it has been two months now since they had all the information and "started work on my case" apparently they just found out that their disabled logo for painting is "damaged beyond repair" and that they have to order another one which will take another week so we will see what happens!
I have also had another Rhemotology appointment, he sent me for some blood tests, including allergies, triggers of IBS and some others. Also i am being sent for a nerve electrical test to see if my nerve endings are working or not, need to wait for an appointment for this.
Friday, 20 February 2009
Friday, 6 February 2009
Frustration & Anger
Today i attended my physiotherapy session, something i have been a little worried about for a while i must admit. My physio told me what i already knew; that my legs were getting worse; deteriating, but before chucking me straight into a wheelchair she suggested a walker frame first. I must admit i was a little horrified to begin with, walking frames are what old people use. But at the end of the day anything is better than going into a wheelchair.
I felt my physio was one of the first people that actually listened to what i was saying about falling over several times a day. She also suggested having a lifeline which is a pendant which you have around your neck also a box which is connected to your phone line with a button. Either of which are pressed it goes through to a gallantry who call your "emergency number" a fiance or family member or the emergency services. Very good for people who are disabled and are prone to falls. They are available from most district councils.
She also gave me some physio exercises to do several times a day which i will try my best to do, they are quite painful to do at the moment but hopefully they will become easier as time goes on. So at the moment i am trying the walker frame for a week to see how that goes, if that doesn't work too well then talk of a wheelchair will be discussed which i will not be looking forward to i will try my best to get on with the frame. But as the physio said my legs are getting weaker and weaker and as i am falling more and more often it is only a matter of time until i fall and eventually break something. The physio said that if i did have to use a wheelchair that it would only be for outside to begin.
Something at the moment is really bothering me, how people judge you without knowing what you are going through. People assume that because they see you one day a week or less that they understand how you are feeling or the pain or suffering you feel. Someone said to me today that if i go into a wheelchair that i am giving up. They don't understand the struggle that i have to endure every day and the pain i go through.
They also said to me that i could be making up the condition, that anyone can go to a doctor spout off a list of symptoms and get diagnosed. I suppose this is correct but i have been diagnosed by specialists, and been through numerous tests, seen lots of consultants in different fields. I also have various different conditions which are also linked to my fibro.
The Social Services contacted me this week advising me that i was going to be contacted soon (within the next month) with a direct payment assessment, at least the ball is rolling now.
The Housing Officer for our block of flats still hasn't put the disabled sign on our parking space and what with the snow this week, it really has been quite dangerous walking across the carpark, i am luck that i have not fallen on the snow and hurt myself; although i have slipped a few times but managed to regain my balance.
I have never felt such anger towards someone as i have today, the person who said that to me, i would almost wish them to walk in my boots.
The other thing that really winds me up is websites about fibro, non of them talk about "severe fibromyalgia" they only talk about the basic symptoms they all talk about exercise which is near on impossible if you have the condition severely as you struggle with so many aspects of life. I try to "exercises" walking far or doing anything that constitutes as "exercise" puts in me in bed for days on end. When i go to my mums house, and just see my nephews and do hardly anything and it tires me out..!!
When i did hydrotherapy (which i am sure constitutes exercise),i was barely able to walk out of the pool at the end of a 30 minute session and had to be hoisted once.
I do have two members of my family in wheelchairs (1 due to a spinal accident and one due to MS) so its to be understood if i just got ill 18 months ago and said ah sod it i want to go into a wheelchair.. but i have been fighting, but people just don't see it.. however much i tell them or explain.
I have never given up with my fibromyalgia but fought it every step, its a shame how some people are so blind.
I felt my physio was one of the first people that actually listened to what i was saying about falling over several times a day. She also suggested having a lifeline which is a pendant which you have around your neck also a box which is connected to your phone line with a button. Either of which are pressed it goes through to a gallantry who call your "emergency number" a fiance or family member or the emergency services. Very good for people who are disabled and are prone to falls. They are available from most district councils.
She also gave me some physio exercises to do several times a day which i will try my best to do, they are quite painful to do at the moment but hopefully they will become easier as time goes on. So at the moment i am trying the walker frame for a week to see how that goes, if that doesn't work too well then talk of a wheelchair will be discussed which i will not be looking forward to i will try my best to get on with the frame. But as the physio said my legs are getting weaker and weaker and as i am falling more and more often it is only a matter of time until i fall and eventually break something. The physio said that if i did have to use a wheelchair that it would only be for outside to begin.
Something at the moment is really bothering me, how people judge you without knowing what you are going through. People assume that because they see you one day a week or less that they understand how you are feeling or the pain or suffering you feel. Someone said to me today that if i go into a wheelchair that i am giving up. They don't understand the struggle that i have to endure every day and the pain i go through.
They also said to me that i could be making up the condition, that anyone can go to a doctor spout off a list of symptoms and get diagnosed. I suppose this is correct but i have been diagnosed by specialists, and been through numerous tests, seen lots of consultants in different fields. I also have various different conditions which are also linked to my fibro.
The Social Services contacted me this week advising me that i was going to be contacted soon (within the next month) with a direct payment assessment, at least the ball is rolling now.
The Housing Officer for our block of flats still hasn't put the disabled sign on our parking space and what with the snow this week, it really has been quite dangerous walking across the carpark, i am luck that i have not fallen on the snow and hurt myself; although i have slipped a few times but managed to regain my balance.
I have never felt such anger towards someone as i have today, the person who said that to me, i would almost wish them to walk in my boots.
The other thing that really winds me up is websites about fibro, non of them talk about "severe fibromyalgia" they only talk about the basic symptoms they all talk about exercise which is near on impossible if you have the condition severely as you struggle with so many aspects of life. I try to "exercises" walking far or doing anything that constitutes as "exercise" puts in me in bed for days on end. When i go to my mums house, and just see my nephews and do hardly anything and it tires me out..!!
When i did hydrotherapy (which i am sure constitutes exercise),i was barely able to walk out of the pool at the end of a 30 minute session and had to be hoisted once.
I do have two members of my family in wheelchairs (1 due to a spinal accident and one due to MS) so its to be understood if i just got ill 18 months ago and said ah sod it i want to go into a wheelchair.. but i have been fighting, but people just don't see it.. however much i tell them or explain.
I have never given up with my fibromyalgia but fought it every step, its a shame how some people are so blind.
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