Keep on going

Discussion in 'Fibromyalgia Main Forum' started by MelaC, Nov 10, 2006.

  1. MelaC

    MelaC New Member

    Hi all I am a newbie. I have been sickly since I was 3. It all started with my tonsils, which caused chronic ear infections. I developed a condition called cholesteatoma (begnign tumors) in both ears I also had chronic mastoiditis, on 2 occassions came very close to dying from the infection being so near my brain. My entire childhood was spent in and out of hospital undergoing major surgeries on my ears. Due to the repeated surgeries 33 in all I lost my hearing and have been using hearing aids since the age of 13. I have been totally deaf in my right ear since I was 14. Last year I was fitted with a B.A.H.A (bone anchored hearing aid). I am technically deaf without my aid and as my hearing continues to deteriorate I dont know how long it will help me. I mostly rely on lipreading which does help.

    I had to have a hysterectomy when I was 30 due to chronic endometriosis and then my overies had to be removed and I was put on hormone replacement 5 years ago.

    I was diagnozed with M.E. 20 years ago but was told that I most likely had it for much longer than that. We first noticed it just after I had my eldest son and with time and repeated surgeries I just got worse and worse. I was given magnesium injections and hemaglobin injections for months to no avail. I was told to rest as much as I could other than that they could not help me. Things just continued to go downhill. After I had my second son I had to go back to work as we were not coping financially. Ever since I first started working my health was a problem. I would be off work so often I would be dismissed. It was not just my ill health but my hearing impairment that made job hunting a nightmare. I worked in a bank for my last job stayed there for 11 years and the only reason that job lasted so long was because I worked on contract for 4 years. They eventually took me on permenantly and I worked on my own doing a job that was extremely damanding. My M.E. got really bad with all the stress and traveling I eventually had to go on halfday but that eventually also became too much. I would get up in the morning and sort the kids out and get to work only to collapse in tears from exhaustion and pain. I would have to catch the bus home and that took an hour and a half then I would have a 20 minute walk home. I would cry all the way home from the sheer pain of each step. I eventually had to resign as it was just too much to cope with my health was really suffering and the M.E. was out of control, also the bank wanted me back on full day. My husband was transfered and where we are now has a better climate. We have been here for 7 years and my M.E. has improved. I still dont work I dont think I could cope with that. Fortunately for me my GP believes in M.E. and is very clued up about it. I was having also having severe problems sleeping. I would have such vivid dreams and because of not getting any restful sleep I was had burnout. My GP tried me on numerous sleeping pills until we found one that suited me and since I have been on them I have been feeling better I still dont work I dont think I could cope with that.

    I have had 3 spinal surgeries. 1 being a spinal fusion where the fused my entire lumber spine. I have also had numerous knee surgeries and had to have a total knee replacement in 2001 as my knee had so much damage that walking was agonizing. I had to have a total hip replacement of my left hip in 2004 as I was in so much pain I could not walk. I have had my right hip replaced for the same reason in April this year. Unfortunately I am still having problems with mobility. I had to have 2 extra surgeries to try resolve the problems but unfortunately they dont seem to have helped. This has made me very despondent as I haven't been able to get out and I am very limited in what I can do. I am in constant pain and therefore do not get much exercise or sleep. Perfect coctail for getting depressed.

    I had to have my gall bladder removed 4 months ago as it was seriously septic. I also had a 2cm gall stone blocking the bile duct.

    I started suffering from the migraines about 10 years ago. They were so bad I felt like my head was going to explode. I went from specialist to specialist and eventually was told that they didn't know what was causing them but they thought it could be related to the M.E. They would last for weeks sometimes months. 5 years ago I saw a neurologist who diagnosed vascular migraines and put me on epilum which worked thanks heavens. Funnily enough when I was in hospital for my gall bladder I developed double vision so they got the neurologist to come and see me and he sent me for a MRI of my brain and wo and behold they found the cause of my migrains. I apparently have a rare condition where the brain stem gets very little blood due to feathery blood vessels. At least now I know whats causing one of my problems.

    I have had a total of 74 surgeries. 4 in the last 6 months which has left me totally exhausted and despondent.I feel so isolated as I cant go out because of the pain. I do not have any friends as I have yet to meet someone who can understand that my hearing impairment, mobilty and M.E. limit me. We do not socialize or have friends as a result of this and since my hip surgery I have been house bound and it gets very lonely. It would be so great if I just had a friend with whom I could share my down days and my good days. I chat to my sister every day as she lives in the UK and I live in SA. We have always been close and she is the closest I have ever come to actually having a friend. People just generally are not very accomadating when it comes to health issues. I am a great listener.

    I must be honest and say that as a rule I am a cheerful person who copes well with my problems. I have had numerous people tell me how incredible I am and how they admire my strength and courage, my GP being one. I dont see it like that I believe I take it a day at a time and do what needs to be done. I miss being able to go for walks, right now around the house is too much both physically and because of the exhaustion.

    I didn't write this so people will feel sorry for me but more to show that we can handle more than we realize and even though some days are very grey the sun will eventually come out and shine brightly. I guess the saying "a friend in need is a friend indeed" at least this way we can pace ourselves and help and support each other through the good and bad days.
  2. MelaC

    MelaC New Member

    Hi prickles thanks for the welcome.Yes I did about 2 years ago but it made it worse. I have alot of titanium bits from my prosthetics. I went through a phase where my entire spine was excruciating. I was told I had "arachnoiditis" A rare but extremely painful condition. I went to a pain clinic where I had cortisone injections down my entire spine as I was in so much pain I could not move. I was also put on morphine tablets and some other potent meds. The pain eventually faded but I have been told like M.E. it can reoccur. I sure hope not.

    I also have the added problem of an underactive thyroid so I am overweight which doesn't help with the hips and back. I have high cholesterol.

    I also suffer from Reynoids syndrome, have had Titsies syndrome both conditions are caused by autoimmune disfunction.

    I suffer from oseoarthritis and that is the cause of my knee and hips needing to be replaced.

    I actually find it amazing that pretty much all the illnesses/conditions I have had are all autoimmune related and are all symptoms of M.E. Its like A great big jigsaw and slowly the pieces are falling into place.

    I sure hope that you all find the pieces to your puzzles so you can get a better quality of life.
  3. Mini4Me

    Mini4Me New Member

    Just wanted to welcome you here. I hope you can find some answers and support from others here. It's a pretty diverse group.
  4. MelaC

    MelaC New Member

    Hi Mini, thanks for the welcome and you most certainly are a lovely group. Its nice to see that no matter how bad things are we can still smile. Have a nice day.


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