this is one of the hardest things i have done, i have had to sit and look at my life as it really is now to write this letter for the pension people.
the hardest thing is that just over 2 years ago i waas working full time studying for my degree, i had an active and busy family and social life. we had plans for the future i new where i was going we holidayed in the lakes and Derbyshire enjoying hiking and wandering through the hills and valleys. we were looking forward to the benefits of me becoming a teacher and the children growing up and becoming independent. my hubby and i were planning our life together and what we were going to do and where we were going to go. and then this happened
The M.E and fibromyalgia have restricted my daily activity severely to the point that with out help i cant manage.
On a daily basis I have to use specialised equipment so that I can shower such as a bath board and grab handles however even with these there are days where I need physical assistance off my husband to enable me to clean and dress. My bed has been adapted and heightened so that I can get out of it although depending on the day I still may require assistance.
I am unable to manage the stairs and have to use a stair lift so that I can get downstairs in the morning and to return up the stairs. I need to use a stick to move around the house or I will use the furniture and walls to steady myself. My chair in the lounge is also raised so that I am able to get in and out of it although there are times when i require assistance to do this. I need to sit with my legs raised or the effort of just sitting causes me to become fatigued quickly. The pain I have reduces my mobility and the speed at which I am able to move considerably it also makes it impossible for me to walk any distance(more than 10m) or stand for any amount of time (more than 5 minutes) however to walk or stand causes sever pain in my lover back hips and knees all the time this just gets worse if 1 do any amount. The pain and fatigue as well as the concentration and cognitive issues associated with these illnesses mean that I am unable to drive and need to be accompanied, when I am able to go out although this is not often. On the days where I do go out I have to use a mobility scooter or wheelchair as I am unable to walk any distance due to the pain and fatigue caused by the illnesses however the days where I manage to get out, are considered to be my better days.
Due to coordination , cognitive issues, fatigue and pain I am unable to cook for my self and this is done by my husband or children, when I try to do this I am unable to lift things in and out of the oven due to the pain and coordiantion issues, and the coordiantion issues mean that I have frequently cut my self making it unsafe for me to do this. I can no longer cope with the bills and financial side of things as I find it confusing and am often disorientated as to day and time. I no longer take telephone calls unless its to family as I tend to loose track of the conversation and cant remember what has been said. For this reason I am accompanied by a family member to all appointments, and my husband now deals with all the important day to day management of our lives and home. On a bad day am unable to even hold a conversation with a family member with out getting confused.
Due to the constraints of the illness i am not able to partake in social actives, as the fatigue, cognitive issues and pain restrict the amount of time I can be out of the house and cope with company as a simple activity such as chatting to a group of people is exhausting and confusing as the noise and interaction between other members leaves me confused and often excluded as I cant join in, because I will have lost the thread of what is going on. However such occasions are so rare as I need to be in bed in the early evening as the pain and fatigue make it difficult fo me to sopport my body and sit up.
However there are days where I am even unable to hold a conversation with my family, get dressed or showered. These days are the result of doing something that most people take for granted such as going to the a Dr's appointment, seeing family or going to the supermarket. however I will not have walked around the shop or managed to do a full weeks shopping, I will have gone on my scooter with a member of my family in attendance to assist. This simple activity will cause post exertional malaise and increase in pain stiffness and muscle spasm leaving me struggling to move or do even the basic things such as get a drink and go to the loo.
These illness have left me unable to care for myself never mind for my family, I am unable to do basic activities such as hoover, clean or cook a main meal. The inability to do these basic things means that I would be unable to go to work as I would not be able to get there or carry out any of the duties that I was responsible for before I became ill. In the time since diagnosis I have only deteriorated and have shown no sign of improvement. More and more medical issues seem to be turning up and since the initial diagnosis I have also developed hypothyroidism, glucose intolerance, gastric reflux, IBS, high cholesterol and have developed some issues with my liver and am awaiting an appointment with a liver specialist for a biopsy. I am also waiting for the referrals to rhumatology and the pain clinic.
Over a month I will have a week where I am unable to do anything and basic activities such as dressing, showering are difficult and require assitnace from my husband. There will be 5 or 6 days over the month where I am able to go out with a family member on my scooter. the rest of the time I will be house bound and some where in-between the bad days and those where I am able to go out for a hour or two on my scooter. But even on my better days I am not in a position where I would be able to work as trying to get ready and the trip to a work place would be exhausting and beyond my caperbilitys.
sitting and writing this out and facing the changes has been hard, its amazing how much we fool ourselves so we can cope with what happens. tears and tantrums have occured facing this reality is not something i can cope with on a daily basis!