Just a quickish hello

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ajay2
New Member


Date Joined Feb 2015
Total Posts : 7
   Posted 2/6/2015 9:27 AM (GMT -7)   
Hi,

I'm closing in on 54. I've had fatigue issues since about 17.
I had brain tumour removed at 19. But retained epilepsy. I've had virtually no assistance since then but struggled on by resting wherever and whenever I could. I was told that I was 'cured'. I think it was my strong willpower and youth that kept me going. However I collapsed end of 2012 and had just run out of steam.
Since then, I've had all kinds of tests etc done. I changed my doctor from a poor almost cruel man to a kind, caring and very professional doctor. She went about trying to find the cause. Eventually after an appt today, she diagnosed CFS.
What a relief.
After spending the last two years trying to convince myself it was all in my mind, and pushing and pushing...only to fall quite poorly each time. Now, I can concentrate on the correct approach.
Boy...
This is one hell of an illness.
I only hope they come up with a blood test to find this asap.

Finally...I can pace myself. Not feel guilty about not having the strength to have a shower! and so on... All the weird symptoms have a reason now and not 'possible cancer of some kind'.

Relief tinged with sadness...as now I know the battle I will have each day.
Then there will be the benefits system next...oh joy.
(I haven't claimed a penny in benefits so far...worked all life and now live off pension and the dwindling lump sum they gave me)

I wish everyone of you the best.
That's my story...sorry, just had to get this off my chest after doctors appt today.
smurf

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 2/6/2015 3:07 PM (GMT -7)   
Ajay, welcome to the forum, I am sorry for the reason that we are here but it is always nice to meet someone who understands my life. Lol! I was about your age when I was dx'd, I had so many emotions from elation of having a dx, happy to know what was going on & anger that I had yet another illness that Dr's didn't think existed. I was sad that family & friends didn't understand how bad I felt & now they never would. I was so relieved to know what was going on.

Quitting my job & going on SS disability was the best thing I did for myself. I remember trying to keep my job & being unable to get to work on time & then I couldn't stay at work very long. My hours dwindled down to almost nothing & I was so tired that I didn't care. Being able to just focus on myself has helped me to find a totally different life & I think a satisfying one at that. I deal with fatigue, in differing degrees, everyday. I never feel guilty anymore for the things I can't do because if I wasn't ill, I would do them. It takes a whole new way to look at life. I went through a mourning process, letting go of the job I loved, giving up my gardening that I loved, giving away all of my houseplants because I couldn't water them, etc. Now I read, study my Bible, crochet, jewelry making (less now then before) & spend time with my daughter & her son & daughter, who all live with me. I enjoy spending time with them.

It certainly sounds like you found the right doctor. Good for you! It also sounds like you are dealing with this with the right mindset. I think dealing with a chronic illness with the right attitude is half the battle. Hang in there & keep posting as you have the energy. This is not a very active site but we can all help each other through the rough patches.

Many soft & gentle hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

ajay2
New Member


Date Joined Feb 2015
Total Posts : 7
   Posted 2/7/2015 4:50 AM (GMT -7)   
Thanks for reply Denise.

Made me feel welcome...appreciate that a lot.

Sounds like you've had a very tough time of things. I noticed from forum rules that we can't be political or religious...but I think there's no harm at all at saying that having a friend you can always turn to, whenever you need them, helps a lot every day too! I too draw a lot of strength from the same place.

Sadly...only one family member truly understands the suffering. I have 5 brothers and sisters too. Don't get me wrong, I still love them...and they will help when I'm VERY sick. It's just the social visits that would help. We all lead such hectic lives now? I cope fine. What really hurts are comments like.. "you need to get a tonic", or even "pull yourself together and fight it". They mean well.

Like yourself and others...I won't be on the site every day. We all know how precious our energy is. Just lifting the lid of the laptop can seem like too much effort at times...woh, I never thought I would be like this ! I was so active when younger.

I wish you all the best for you and all your family.
androspandros was my school nickname.
You may have guessed my name...
Andy.
x

ptl4now
New Member


Date Joined Feb 2015
Total Posts : 13
   Posted 2/24/2015 8:39 AM (GMT -7)   
It is wonderful to finally get a diagnosis! When I got mine, I nearly laughed, was smiling. Kinda funny, but it was such a relief to get an ANSWER!!!! TO have validation that there is something more wrong with me than something in my head, or that i was just that lazy, that my character was that bad!! Sucks its not treatable, but at least I know what I am dealing with!

Just a thought....I would claim that disability as soon as possible!! It can take YEARS to get approved!!! If your cash is dwindling, you may want to get on the ball with that. It's an insurance you paid in to your whole life, it's not charity. Would you feel guilty accepting a check from State Farm if someone side swiped your car?
Sara

Fibromyalgia, Chronic Multifactoral Fatigue, Diabetes, Cyclothymia, PTSD, Scoliosis
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