Wednesday, 21 April 2010

facing the ugly truth

it seems to me that without realizing to be able to continue we lie to ourselves, we tell ourselves daily that this life we lead is fine and nothing is wrong. i am pleased and feel happy with my self over what i achieve blithely ignoring the stuff that sits undone because i cant do it. we adjust and accept how things are and tell our selves that its fine, it becomes normal that i no longer go anywhere without another adult.

gradually Paul has taken over the role of house wife and carer only we dont talk about it. in our little cocoon we are doing fine life is normal and we have no problems that we are no dealing with;

then a stranger comes into our home and with a few simple questions the truth hits us, its not normal for a 41 year old to need help to dress in the morning and to wash. its not normal that my husband is doing 99% of all the jobs in the house while i sit and watch to tired to help. or that i got to bed before hubby goes to work at 7.30 so that im safe. and when the question is asked about what do i do outside of the home independently. the hard truth is nothing. facing the truth is more than we need and so much more that i can cope with.

when this stranger tells you that your husband now spends over 12 hours a week caring for you and that if you were on your own you would have to have someone come in to the house to help. and that help is only for the basic needs cleanliness or your person and food. they dont count the fact that he does all the washing, cleaning of the house and cooking. they talked about having someone come in so he could have time off from having to look after me. when did i stop being his equal his wife, to being an extra job and more work that he needs rest from.

the truth of this and having to think about it is not something i can cope with so i think the ugly truth can remain buried under a thin layer of lies that allow us to cope laugh and smile as the reality is to sad and scary to have to think about.

so i choose to hide from the ugly truth and live with in the web of lies i construct as it is these that keep me going each day, its believing that i help and do something other than add to my wonderful hubby's problems. i just hope that web we constructed that allows us to hide is not damaged to much and wont take to long to rebuild so that we can hide again f4rom that horrible ugly truth, M.E

Sunday, 18 April 2010

my M.E story so far..

I thought I would share my journey with you all. Looking back at it now it has been a bit of a roller coaster ride that does not seem to be finishing yet!

I have always needed more sleep than most people I know and been susceptible to every infection going. I always put this down to my asthma and the high levels of prednisolone that I was frequently taking to control it.

By May of 2008, I had started to fall apart. I was sleeping 14 hours a day and struggling to hold down my job as a HLTA (Higher Level Teaching Assistant), as well as going to Uni where I was doing a degree in educational studies. I was also caring for my family. I had flue at the beginning of April and never picked up (you know the real flue that leaves you in bed and a total wreck). By the end of May, I was a nightmare to live with - I snapped at everyone, had a permanent sore throat and lost my voice. I was frequently in tears thinking I was going mad as everything seemed so out of control (being a bit of a control freak this was not good).

My fantastic GP did depression scales and told me that I was not mad but probably ill and signed me off work for a fortnight and ordered loads of blood tests which was to be the first of many.

I went back to work still very tired and soon was worse than before. I struggled on till July having days off to sleep. The pain in my legs and back I put down to sciatica and I tried to work through it. Work kept asking me questions and asking what they could do to help! The only problem was they didn't really sound like they wanted to help. What they really wanted was the old me back who did everything and never complained and always smiled, something that had disappeared by this point. I didn't know how to help myself and started to feel very threatened and insecure at work. This was made worse by the fact that every time I came back to work after being off I had to have return to work interviews where my attendance was discussed. I remember feeling threatened as all the management team sat there and wanted to know why it was only at 50%! If I had known the answer then I would have given up trying to fight. I was moved out of the year group I had been working with and where I felt secure in order to support a failing teacher (which was a joke as I could not even support myself).

The GP referred me to and ENT specialist and to a Dr from the medical team. A the end of July, he started suggesting that maybe it was PVFS. Loads more blood tests showed my LFT (liver function tests) had gone through the roof because of the amount of paracetamol I was taking to try and control my temperature as well as the pain in my legs and back (although I never exceeded the stated dose).

The ENT Dr said I had visible muscle weakness in my vocal cords and discharged me. The medical Dr told me I had CFS and that it will take at least two years for any improvement. He suggested I made some major life changes as the job I had would only cause me more issues as you are at constant risk of infection. At this point I was still hoping that the 6 weeks summer holiday would be enough rest for me to recover!

While all this is happening, my calcium levels dropped and I found a breast lump at the beginning of September. By October, I was in hospital having them removed, (they were benign). The surgery knocked me down even further and by now the fatigue was such that I was sleeping 18 hours a day and finding it hard to do even the basic things like bath and dress. The amazing thing though was the discomfort from the surgery was nothing in comparison to the back and hip pain. This is when I started to really worry.

By the end of November, I find I cannot walk without using the furniture in the house and have increasing pain in my legs whenever I do walk or stand. On standing, the pain was also around the abdominal muscles. The weakness caused by the fatigue and the pain slows my walk to a shuffle and I have a permanent tremor that is exacerbated by exercise.

Over Christmas, I ended up using crutches to get about and collapsed after a short trip to Morrison's with the parents. The collapse was caused by sheer exhaustion. The muscle pain and weakness now affects my arms and a load more tests are being done. I am referred to a neurologist and the M.E clinic.

Work started to threaten me with disciplinary action as I have not returned to work and I am still handing in sick notes. They referred me to occupational health but they use this as a threat. I started to worry as I’m still at Uni but in order to continue, I need permission from work and my GP as the Uni are starting to get a bit concerned about my ability to continue due to my illness.

I wake up in the night having had the most vivid nightmares and can be so hot I can’t bare the duvet on me even if it's below zero outside and the heating is off! if I am having a really bad night, the IBS kicks in as well. Oh the joy of it. Makes me wonder if it would be easier to have my bed in the bathroom!

After my visit to occupational health and the medical assessment, work backed off. They gave me permission to carry on at Uni as did my GP and the M.E consultant who felt that this would be a good thing for my mental health. I started to use a mobility scooter if I go out and can sit to help prepare dinner. I went to university one day a fortnight and was prepared for the three days it took to recover. The struggle and the fight I had with the Uni to complete my degree was worth is and I graduated with a 2:1 in July 09.

In the July of 09, work informed me that they would be seeking to dismiss me on the grounds of ill health which they have still yet to do. Between then and now, I have had to learn about the benefit system and endure medicals and people questioning me as to the severity of my illness and the reality of it. The difficulty with the system is that the reviews and questions are constant! I hate the way they make you feel guilty for asking for help! My latest struggle is with trying to apply for my ill health pension. I can’t say I hold out much hope but I won’t give up!

Friends have disappeared and new ones have taken their place although I still find myself grieving for what I have lost. For the most part, I accept my life for what it is - severely restricted. I am still undergoing tests and new problems seem to occur every month, I am now glucose intolerant and take diabetes medication, I have hypothyroidism, and recently my liver has started to mess about again so am off for more investigations!

Yesterday I went back to see the M.E consultant and he was surprised by my deterioration over the last two years. Not all of it due to the M.E, as the diagnosis of fibromyalgia has also now been confirmed. I have to say that I feel lucky in some respects because all of the Dr's that I have seen have been fantastic. None have dismissed me, any new symptom is checked out and not just put down to M.E. and most of this is because I have a fantastic GP.

I have learnt to manage my illness to some extent though I can’t say that I pace effectively all the time as life and pacing don't necessarily go hand in hand. Sometimes I choose life and take the payback although it does make me grumpy!

What I do know is that I would not have managed any of this without the love and support of my family. I am lucky that I have a fantastic husband who has never once made me feel bad. The constant company of my dog Google is something I’m forever thankful for and now on good days, we go out on excursions together, both of riding on my mobility scooter!

Saturday, 17 April 2010

a lovely day

this morning the sun was shining, and i woke up feeling like i do on one of my better days so i new an adventure was in the offing, it was time for an outing.

so off i went with google on my scooter and josh came to...

we went to the park for google to run around, barking like a nutter, he spent 10 minute's busily clearing the park of all the birds and then another 10 minute's checking all the smells (you know the ones that only dogs are interested in) till he came back and looked to me for a ride, so we went over the bridge swerving through the slarllem gates, through the cycleways lined with daffodils towards tesco, with google bounding around at top speed checking all the smells and busily adding as many of his own as possible so that all the other dogs would know that google had been here. we said hello to all the other dogs we met on our way (google hiding behind my legs if he did not like the look of them obviously the red setter looked very dodgy!)

finally he had had enough running and decided he wanted to ride. he climbed onto the scooter sitting between my legs his head lolling on my foot as his ears flapped as we whizzed along his pink tongue hanging out and a huge grin on his face. google loves nothing better than and run and ride. he laid and snoozed with josh while i did a quick rampage around tescos and covered the scooter in shopping (im really not sure if you are suposed to hang shopping bags off the head rest ). fully loaded we sped home watching the battery lights disappear with fingers crossed we made it. as we pull up outside our house google climbs off carrying his lead to the door as he yaps excitedly at the door to let Paul know he is home. another adventure complete now its time to sleep in the sun and dream of the next one!

going out with google and spending time with my family is something i love.

Tuesday, 13 April 2010

who am i now?

Who am i now is one of the questions i have been asking recently. I know who i was , i was a trainee teacher/student, main carer to my children and hubby, housewife, with a busy social life and lots of friends, i was an active person who like being outdoors and loved to hike. My whole life was goal driven it was about what i was going to do and how i was going to get there and being better than last time.

All that has changed i now no longer contribute to society by working, or to the house hold fiances nor am im the main carer for my family, i am now cared for, i no longer cook and clean or have an active social life as most of the friends i had have disappeared into the wide blue yonder as i no longer participate in life like i used to.

I have however started to redefine myself as for a long time i was not sure who i was. Yes im broken but im still here. I have found new things that help me to define who i am and give me a sense of achievement, pride and allow me to feel needed. Coming on foggies helps me fulfill the needed bit by being able to offer support to others, making cards and painting gives me the sense of achievement and completing something, planting stuff in the green house gives me the pleasure of watching stuff grow.

I now find pleasure in my success's how ever minor and have pride in the small things that i achieve, i miss who i was but i like who i have become, i am more patient, i am able to take pleasure in the simple things i used to take for granted. I am not the person i was pre m.e and i don't know who i would have been if this had not happened, but the person i have become is not all bad, i do miss being able to do some of things i loved like hiking, and work, but i have learnt that these did not define who i was just as m.e does not define who i am now it just creates a few more challenges for me to overcome. In some ways my life is better i have a stronger relationship with my husband and my children as now we have to work together to achieve things. My glass is still full but its content has changed!!

Wednesday, 7 April 2010

facing reality

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!

Friday, 2 April 2010


easter is a good time of year spring is beginning, the first green shoots can be seen as the plants wake up from there slumber the daffodils dance and the birds are singing all thats missing is the sun!

it a wonderful time of year when all of nature is renewed and given a new set of clothes to display to those watching. the hawthorn at the bottom of my garden is covered in buds as it wakes to the blackbirds building there nest, the doves are arguing and fetching bits of twig for there nest in the elder that has just started to sprout the greenest of shoots as its new leaves start to emerge to protect the doves young and hide them from view till they are ready.

its a lovely time of year if you have time to sit and watch, the problem is that all i have is time my spring preparations are taking place without me as i get to watch. hubby tidies the garden after its winter sleep and plants the summer bulbs as the spring ones are erupting all around there jewel bright colours luminous again the darkness of the earth and the bleakness of the weather. im not rebuilding my nest and decorating it like the birds but yet again i get to watch hubby clean, polish and paint to brighten up the house after the cold dark winter gradually bringing it alive and vital ready for the spring and summer. i watch on sitting in my chair while they all bustle around me chattering in excitement as the winter ends the only problem is my hibernation seems to be ongoing and have no end.

my spring has not come im still stuck in the depths of the m.e winter with no new green shoots of life appearing. my spring seems to have stalled and no new life is being breathed into my hibernating body. maybe as it gets warmer the sun will entice me out of hibernation and give me some of the freedom i so desire so that once again i can dance in the sun and feel the energy of spring running through wakening my body from its slumber cracking the ice that holds my joints an muscles so hard and firm allowing me to feel free and unhindered.

easter is a wonderful time spring is here new growth ,new life, new hope for a better year...