Hugs!!! Xo
I am so sorry you are going through this. My heart is truly breaking for you!! I am newly diagnosed with fibro, just 3-4 months now and I have not dealt with it the way you are so I really am not qualified to give you "medical" advice on how to recover physically. But I can try to ease you heart and mind by telling you although we are not there with you physically we are all here with you emotionally. We have all dealt with the pain on some level and I'm sure there are many who have been where you are. Stay in contact and keep talking to us, it may help : ) As far as this being in you're head IT IS NOT! I have been so fortunate and blessed to have the doctor that I do. On my first visit with him he sat quietly reviewed my blood work, my paper work, examined me, and asked questions, he did not seem to be very "personable" and when he was done with all of that he sat in the chair right in front of me and said "Fibromyalgia is very real, this is not in your head." I hadn't even told him my concern with that, I had been so scared the month prior to my appointment that that is what he would say. Please keep in touch with all of us, I will be thinking about you and praying for you. Let me know of all of your accomplishments you make through your healing process so I can encourage you to push forward.
Hello all
Today was day one at home. I managed it! Had a meltdown this morning, I looked around me and all I saw was disability equipment, walking frame, rehab trolley to carry food, shower chair, toilet chair with arm raisers for standing, a sitting to standing armchair, then the person arrived a program here called meals in wheels where volunteer drivers arrive at your home with a hot cooked meal from the hospital. He zipped in and out with it. When he left, I burst into tears and thought how has it come to this? Eight weeks ago I was fully functional and working 40 hours a week. It passed after a call from my doctor in which he said it’s taken eight weeks to get here Lynda and in eight weeks you wo be here. I kind if got that, it pulled me out yes I thought he’s right in eight weeks I will be in a different place. He did say though that returning to work will be a staggered process. He said that the Drs at the hospital had indicated it would be three months or more before I could be full time but he didn’t see any reason why during those three months wouldn’t be able to do a few hours a day. But not yet he said, probably not within the next month, that would be needed to be recovery time. At the hospital they tokd me inwas in a flare if both fibromyalgia and polymyalgia rheumatica. They also said indefinately had chronic fatigue syndrome and were more than satisfied that I had that. The thing with labels I said is that mostly they hang in my wardrobe! I wasn’t being flippant. It’s good to be be able to put a name to what’s going on, but I dont want it to define who I am, I don’t want a label to limit me. I’d be lying if I said I’m nit limited it’s just sometimes when you get a label people expect less of you and I find this offensive. People with the most severe disability do achieve great things. I dont want people to expect less of me because I’m disabled. Sort of a rant about that.
Today aside from that meltdown has been ok. Mostly I’ve just laid in my bed but I did wash the dishes and I showered myself. I also made myself a few coffees. Not a lot for sure, but more than I did yesterday, and I’ll take that as another baby step on this recovery journey.
The meds for this is morphine, gabapentin and paracetamol. I am on B12 shots, multi vitamin, blood pressure pill, sleeping meds, can’t remember the others, for other things.
Last night when I got home I came to bed turned the TV on and the light and settled to wait for a program I wanted to watch on TV. I promptly fell asleep and woke at 3.35am. Yes I’d missed the program. I wasn’t phased I thought oh well this is how it’s going to be for now. I’m less stressed now than I was and have developed a go with the flow mentality. It’s easier to do that than it s to try to swim against the tide. I am still writing my lists, I even had to write a listvfor what medication I take and when, sort of a medication timetable. Well if that’s what it takes to remember I thought so be it. I’ve had to write questions down to ask the doctors thank goodness for my iPad which I write my questions on and their answers on so I remember them. The Drs are fine with me doing this…it takes what it takes!
I dont have plans anymore, I’ve found it best to take each day and what it throws at me as it comes. Making plans tires me and then if I have a plan I feel I have to follow it and this doesn’t allow me to change things if I need to because for me a plan must be followed to the letter, may not be that way for you.
I have not been as sore today so it looks as if I am now getting good pain coverage with the meds.
The exhaustion remains the same
Much love to you all
Lynds
Lindy-Loo, I can so very much relate to all you are going through. I was bedridden too for almost 5 years using a cane and the wall/whatever was in reach to get around the house and refusing to go out because I was in so much pain and so depressed. I cannot honestly tell you what pulled me out of bed other than the love of my husband and the fact that life was rushing by while I tried to escape pain by lying in bed trying to make the pain as small as possible!! I no longer use a cane either and now force myself to get up and go out to be around friends. Unfortunately, things are really tough again as I was using narcotics and can no longer get them but I am bound and determined to get SOME relief by trying different meds until I find some that work for me again.
I can totally relate to all your pain and depression hon, all I can say is please hang in there you are NOT alone!! Sometimes the pain in my legs and feet is so terrible I am afraid I will never take another step. Somehow eventually you do get used to being at a level 9-10 of pain and you will wonder how in the world you got used to it! I find myself crying a lot without knowing I am crying because I am in pain but have it 'switched off' in my head; this sounds really weird but it's the truth, the tears run down my face and I don't realize I'm crying until the tears drip off my face. The chronic pain you get used to but the depression and exhaustion are overwhelming and really hard to get over.
Good luck and keep in touch!
Teresa/EstesParkLioness
Again so many thanks for being there for me. It is helping me refocus on the here and now. This is a new day! I did nit sleep last night because of the pain and my thoughts are to get through this morning, get up and dressed and this afternoon to take a shower and come back to bed and take a couple of sleeping pills and go off to sleep. Who said sleep had to be a night thing? I’ll take it where I can at the moment. I need to remember to keep my fluid balance up because I just forget things like that at the moment so I’m going to set my alarm on my phone today hourly to remind me. I probably won’t get much more than the dishes done but I will have gotten something done. Life’s like that just knowing I have done something in my current state makes me feel good… Others would probably not bother trying but being a little productive is important to me. I am making baby steps, I know, but I am making them. I’m nit planning for anything else if something else does get done by me I will celebrate but if not ok too.
Hi LIndy,
I think you have everything in proper perspective! Exactly sleep when you can sleep, do what you can when you can and don't over do it! Sounds like you are making progress, and yes, baby steps! We all do baby steps at times!
And know that we are all here for you!
Big hugs and well wishes,
SK