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Hi everyone, my names Rosie and I have been suffering for the past 6 years from cfs/me. I've decided to join here as I wanted to talk to fellow sufferers without posting things that all of my family and friends can see.. Could anyone help me with how it works as I have no a clue what I am doing. Thank you smile

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  • Posted

    hi rosie. welcome aboard. sorry to know you have ME/CFS. hope it's manageable for you. on here, ppl tend to just post their inquiries and others respond, whether with support/suggestions/relevant information/signposting etc. etc. there are guidelines re posting i.e. what's acceptable etc.. for example ppl are not allowed to advertise. there's an active modertaor as well as the forum guidelines.

    hope that's helpful

    Caitlin.

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    • Posted

      Ok thank you for your help! I didn't know things like this were there so I shall be looking and commenting :-) hopefully I can learn a thing or two or help others!

      Thanks again x

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  • Posted

    Ok thank you for your help! I didn't know things like this were there so I shall be looking and commenting :-) hopefully I can learn a thing or two or help others!

    Thanks again x

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  • Posted

    Hi Rosie, may I exited a warm welcome to this forum. I am sorry you have CFS/ME. it is such a difficult, debilitating, distressing and often painful disease. My testemony follows. I have posted it in other CFS/ME discussions but I expect you don't want to go searching for it.

    ==========

    About 1963:: It was an idilic life for a young father with a lovely wife and threeYoung boys. Up early to tend The horses, walk and milk the goats. Family breakfast then off to School and on to the office. Then collect the boys and off home to walk the goats and tend the homes. weekends just as packed. It was a great action packed semi rural life in our large old house requiring endless maintenance and boundless energy. My energy fell a little short when the wheat and barley fields were sprayed. That should have warned us.

    Then came the Wilson era. Mr Wilson infamous for his "pound in your pocket" delvaluation speech. We could no longer afford our lovely big old house in its large garden and stables and outhouses. We sold up and moved to a smaller country house twenty miles the other side of town.

    It was not long before I went to the doctor. It is one of these "space age viruses" he pronounced. Code for "I have not a clue what is wrong with you". As I didn't get any better he referred me to a chest clinic. There the consultant looked at my Xray which had a number of bright dots sprinkled over the chest. He suspected Sarcoidosis and a biopsy proved it.

    He put me on a "smalll" dose of Prednisolone (22 mg daily) for three months. He assured me with two or at the very outside three treatments of three months he would have me right. From the first pill it was a disaster. Worse, I had not yet learned to say "No" to a doctor. The fatigue grew worse, I generally felt unwell, brain fog came and deepened, memory became more and more patchy, logical thought more and more impossible-at its worst, I had half an hour first thing in the morning-the smallest decision could take a day, or two or three. Speaking took immense effort getting a couple of words out at a time. 

    One time when I was about 40 I was walking with my father-in-law. He was about 70. I just could NOT keep up. I felt that I must be like an 80 year old. My legs would not go fast enough. And I was cold although I was wearing my wool overcoat on a hot  August day. 

    All that was spread over ten years. To me it is just a vague, patchy memory of misery. Our GP fairly early on had told my wife that such illnesses sometimes happened and she should not expect me to be around in about two years. Even in that my doctors were not correct. But pill was added to pill. None helped. At the end of this nightmare period I was attending the professor of psychiatry from the local top rate university. He listened/waited patiently while I struggled to get out the words to answer his questions. He added a large pill to my already large selection. But he wrote to the lung consultant begging him to stop the treatment. The Professor at least did not think I was a nut case or that my troubles were all in my head. Somehow when next attending the lung clinic I managed to decide. I told the consultant I would not take any more of his pills. "Is that fair to me." he replied. "If I do not come back, would that be ok?" I said.  He seemed happy at that.  

    We, my wife mostly, had been doing some research. It was difficult. There was no web that provides us with so much help today. We talked to friends and got some help from homeopathy. We were also told that if all else failed, and we felt all else had failed, we should move to a different area. So we sold again and moved into town. That was the beginning of the long slow road to recovery. My wife took advice from a dietician. So I had a short period of a diet of filtered water, boiled brown rice and pears. Why? apparently few people react to brown rice or pears. Then one food at a time was added. If I did not react that food was added to y diet. If I did it was excluded. With my new diet I gradually, very gradually made progress. Once I was making progress it was obvious when a household chemical or cosmetic upset me. Any offender was excluded. It also became obvious when I became affected by chemicals outside the house. I became very wary of any scent of chemical including cosmetics. With unremitting care and perseverance I regained an acceptable level of "normal" health. It had taken much of another ten years. After that I gradually became more confident and little by little I found I could tollerate nearly everything that I had once excluded. I was almost normal once again. Sadly, I have few memories of my boys growing from primary school to their mid teens.

    The major lesson I had to learn the hard way was never to push myself physically. Wherever I did there was a long pay back penalty of exhaustion and fatigue. I still cannot afford to push myself. I have to think very carefully whether the object is worth the cost of two to three days of being washed out mentally and physically.

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    • Posted

      Sorry Rosie about that typo my system helpfully gave me. It should have been, 

      May I extend a warm welcome . . .

       

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    • Posted

      What an inspiring story! I am so glad you are in a better place now and can start enjoying life again! I try not to push myself too much but with univercity it can be very difficult so this is the struggle I face at the moment. I am sure I will gain a bigger undertstanding soon though. Thank you
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  • Posted

    Hi Rosie:  me, I just write what I am thinking/feeling at the time of opening up this site...don't be afraid to ask questions, say how you are feeling etc, as what I've noted is that all are in same boat, and have experienced all the same issues...including being able to say things that we feel we can't talk about to our family members, as, yes, we do feel that they don't understand, as we are not carrying around a VISIBLE injury, hence many think it's in our heads...and don't understand why we can't contribute (physically/financially.emotionally) as we have done so in the past...start typing, and you'll be on your way to a new path of self-awareness..
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    • Posted

      Yes, my family and friends are great it's just difficult sometimes talkjng to them. For example yesterday I couldn't put my shoes on and off due to the back pain .. I'm a 19 year old girl, this should not be normal? It made me feel awful and quite stupid to be honest, things like that no one would ever understand so I thougtt seeing other people who are in similar situations may help me psychologically. Thank you! smile
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    • Posted

      Me again Rosie....yep, it would be hard for others who can't really understand, to acknowledge that you were having difficulty with such a "minor",  everyday function...unless they had been there themselves.  Would you like to know what frustrates me the most?  It's the "clumziness"...I'm always dropping things, and yes, always in the kitchen, with tiled floors...and yep...they break !! It's becoming a bit of an issue, as it can be things like saucepans, and then their lids break...glasse, cups....and then of course, when I try to remove a "tiny" tablet from it's alfoiled safety space,  I drop the tablet, then all have to help me find it, as we cannot leave it lying around..expecially the Oxycontin...and I actually am feeling a bit better typing on this site (psychologically), as we are only names and numbers, and can type away, for as said on your first entry,  others don't know/judge us..hear from you again....Bron
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    • Posted

      Oh god yeah! Do your hands always shake? Mine are and that's why I drop stuff like my tablets or can't even drink water from a glass as it shakes so much haha so annoying!
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    • Posted

      Hi Rosie...pleased to see you have come back...well miy hands don't shaake much anymore, but they certainly did in early stages (about 10 years ago):  people used to always comment on same when eating with family when all together...my hands would shake and it was more noticable as this made my knife and fork to shake, so my children always asked me what was wrong...now I just DROP things..they literally seem to slip through my fingers/hands...it's as if I hadn't even taken hold in the first place (maybe I hadn't,really, as I am told, that as the nerves and my sensation of touch, is being affected, I may think I have grasped the object, but may not have...but I feel/think I have..) My rhuematologist tells me that the same sometimes is affecting my speech, as I know what I want to say, but a different word comes out...even make mistakes in calling people by their wrong name...I know their name in my head...but will call them by another name (VERY embarrassing this one is)..and so is the wrong word, as usually it doesn't even fit into the sentence, and people think I'm stupid (yesterday I was asked how much rain we had received...I said "nearly 20 inches, 800 mls"....of course way out..I mean't to say nearly 500 mls, but the 800 just came out, and of course the person just looked at me funny...and yep, again, I just shrugged to myself, and thought "what the heck".  chin up, at least I can still speak,(even if sound dumb)...not like those patients with Parkinsons, Muscular Dystropy, Neurone Disease...to name a few.....talk again Bron
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    • Posted

      Once I got sick, I wondered who put my feet way down there.  I know what you mean.  About half the time, I have to have my husband put on my socks and shoes.  I feel a bit silly when this happens.  I can't decide if it makes me a little girl or an old lady.  Lol.  Oh, what's even worse is when I can't take off my bra.  Imagine having to go to your husband to have him help.  He still giggles every time, the jerk. cheesygrin
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    • Posted

      Rosie, do you crash into walls?  Everyday, and I mean everyday, I will be walking down a hallway and tip over.  I have to catch myself on the wall.  Also, and this I don't understand, I can't seem to get through doorways anymore.  I would say about half the time I try to enter a doorway, I hit the doorway with my shoulder and arm.  I have bruises along my arms from banging into the doorways in my house.  I can't imagine why I can't get through doors anymore.  Ideas?
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    • Posted

      Hiya yes I compeltely get what you're saying!! I always walk into the door way and my boyfriend is always doing my bra up for me! In a weird way being unwell brings us close together ? Do you get what I mean?
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    • Posted

      Totally.  The doorway thing is weird, isn't it.  But, you are right, being sick has made my husband and me closer.  We had to work at it, but having done so, we are so much better in sync.  I love him dearly.
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    • Posted

      Yeah it hasn't been easy, I'm only 19 so it's difficult when all our friends are out and I can't go or I can't move because my back pain etc but he's crazy understanding and makes me love him more haha so soppy!
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    • Posted

      Dear Ravenwood, you will miss it when he doesn't giggle. For quite a different cause of difficulty I undo my wife's bra. I do it with a kiss. Soppy? No, I don't think so. Nice? Mm yes.

      PS I also do it up with a kiss. Disappointed? No, I don't think so razz

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