Hi SK I’m doing better than I was. I am still spending most days in bed but slowly my energy level is rising. Today I was able to have a shower and have a friend to visit for an hour. She bought lunch with her for us both. Was nice to see her as well. I am taking baby steps. One of the things I do each morning is a very quick clean in the bathroom. I’m keeping this up. Today I also made my bed prior to hopping back into it. Sure it’s not a lot but it’s 100% more than I was doing prior to being hospitalized. I am still very tired. I explained to my doctor yesterday I am nit falling asleep at nights I am falling into exhaustion ( which does mean that I sleep) but it is exhaustion I’m falling into. Small positive movements back to life. Lindy.
It first occurred to me about five years ago. I hadn't got full blown fibro, but it was definitely in the works. My back was in constant agony and for some reason I injured both my knee and elbow in the same month, and they just refused to heal. It occurred to me then that something significant was wrong, and I thought, "auto-immune." But I didn't put a lot more thought into it and pushed it to the back of my head. A year or two later and I had the full blown deal. I could no longer deny that I was very ill. But it wasn't until this past winter that I really accepted that I am handicapped and that my fibro is much worse now. It was a relief to finally admit it.
For you, here's what I would suggest: make up a manilla file for yourself as if you are one of your own clients. I'd like you to put your name on the file and include notes and paper work in it exactly as if you were treating yourself at your workplace. (Of course, this is a do it at home exercise, not something that you bring to work!) Make sure that you put a care plan into place for yourself and write up goals for yourself, like: "look at myself in the mirror while admitting that I am ill from fibro." If you can look at yourself from the perspective of another person, then maybe you can learn more about yourself, including how to learn to accept your predicament.
I'd also suggest counseling, so you can figure out what it is that you are getting out of exhausting yourself at work to the point where you are in agony. Do you know that if you keep this up, your fibro is going to get even worse? It seems to me that working in a stressful job makes fibro come on much harder. It certainly was true in my case.
Maybe you can arrange it so you can work less days or less hours. Work IS important to us...but many of us can no longer handle it. If you can, that's fantastic. But it might be a good idea for yourself to think of how you'll cope if you no longer can work, which God willing, will not happen.
I just ended my work career and I've promised myself to get out of the house at least once per day. Even if it's just to go to the drug store. Or down to the lake Or to the grocery store. I have to go out. And that means washing up and getting dressed. Make up is optional, my choice for the day.
I also have promised that I will get some daily sunlight due to my vitamin D deficiency.
And I even went to the senior center and found out that I can attend their events. Fantastic! There's some instant company for me.
I do all of these things to keep depression from coming on. I HAVE to feel that I have some sort of reason to exist each day, even if it's only to do tasks.
Finally, I'm going to pursue my interests in art and writing. I've just drawn a leprechaun to go with the murder mystery that I wrote last year. I want to publish it online at Amazon. I also want to make jewelry, and maybe even sell some online. So maybe, just maybe, I can still work a bit.
I tell you all of this as a guide as to how you might want to set up your eventual retirement, if you must leave the work world earlier than you'd planned. I'm going to try and focus on what I CAN do and on positive things. It might be something you could benefit from as well.
And oh, my dear, you utterly have my sympathy! I remember those days of pain and fear and frustration. And tears. Please try to be good to yourself. You're the only one with the power to treat yourself better. And I truly think that stopping the high pace will keep your fibro at its current level, instead of increasing due to stress and over-work.
Hugs for you today
Petunia
Thank you for the practical tips. At the moment I ahbe just had a major flare and have been off work for 7 weeks and the dr is saying it wil be 4-6 weeks before I will be ready to resume work n a part time basis. I am learning that nit is not as bad a si thought it would be to be not working. I got extremely sick this time. It was not just Fibro butmi wen tint a flare of fibroid polysmyalgia rheumatica at the same time. Finally I have also been diagnosed with chronic fatigue syndrome. I may well look at reducing my work hours or at least doing some of those hours frommhome. This is a possibility and would mean I could lay up on my bed and read through papers and comment om policy. So I am going expo ore this on y return to work.sometimes, and it ws true inmmy case, we are trying to running away from the fact that I do have a serious illness. If could work hard I coukd stay in denial about what was going on in my body. I did not,like the feeling of being out of control…I struggle with not being able to control what’s going in In my body. I am now using the wheelchair a lot more. I am nit using it for pain but because of the level of fatigue I am feeling. I am going out when there is someone to push the chair as propelling myself further fatigues me. I ambit making any long term decisions until I am well and this is a spot on choice. I can tell you I was so sick this time and was bedridden for six weeks prior to having a two week admission to
hospital for two weeks. It will be a slow climb back to where i was. Imhave also accepted help in my house and with showering… I have also accepted a device here where they bring meals into your home once a day Monday to Friday. I did this to ensure I had a meal as the exhaustion meant I’m often wouldnt eat. So I have dropped a lot of resistance to accepting help. I can acknowledge I have a disability or actually disabilities. The more people like you share from your own experience helps me. I am looking at things I can do if it Comes down to me needing tomretire medically unfit. But for I’m off Somplaeas ajar eawkkqa
,erious illness/s
Sorry for all the errors in mt typing the fatigue has been makingnthis happen,almaosr lie VTOL tired to check ofte fingers not lifting enough.
I'm so sorry to here your story, it sounds like me I pushed and pushed my body and It was screaming at me to stop but I didn't listen I was a RN, working 4 days a week, I was looking after my termily ill sister in-law who was dying of COPD and was on oxygen 24\7 6mnths before she moved in I looked after my elderly mother-inlaw for 10yrs and as she got older the more dependent she got. sure got people into help but I still had to work a 9hr shift and then go home, and make sure ma was ok cook her tea as she refused to eat anything I arranged for her, do her laundry and put her to bed. she was my husband mother but I did all the work down to emptying the commode to bringing her the paper of a morning. Then of to work mornings just killed me I was in so much pain I was not using narcotics then and I dying inside. When enevedly she fell and broke her hip because she was just old and coul'nt walk anymore I just had to be honest and say she needs 24/7 care and I can't do it anymore I looked like the bitch but I was just hanging on. 6mnths later I got my sister in-law another 12 mnths so I no burn out when I here be kinder to yourself you have to be I ended up in Hosp with SVT which makes your heart beat out of your chest they actually stop your heart to get it back to the right rythym, migraine head aches, were I have to have narcotic inj to get relief, and the septacemia just about finished me off I had to give up work I was sicker then the client I care for it broke my heart and I miss my job but feel so much better with the oxy-contin it at least gives me a few hours where I can be productive it's so hard to get out of that deep black hole or just hanging over the edge by your finger tips. Iv'e been down that hole and it's scary and you know things are never going to be the same as they, because they can't be the price is to high so I' feel hearfelt compassion for you but you change your life because severe burnout is your body way of saying stop so listen don't be me.
Hugs. I took care of my mother for 18 years and whilevwe don’t do it for the thanks it a totally thankless task! I’m glad things are finally coming right for you. Again hugest hugs to you.
I took care of my Dad and my Mom until they passed...16 months apart. It was 5 years of continual care and continual use of cortisol. Then after they passed we had a family tragedy and then birth family found me (which turned out horrible). I think our bodies are only made to take so much. Knowing to say "no" now is a good start.
How do you fill your days? Some days are just so empty feeling.
Hug you,
Kitty
Hi. I’m mostly still bedridden since being out of hospital I went to the dr for review last Thursday and told him this but sometimes I feel no one is getting the level of tiredness I’m feeling. I’m past tried I’m exhausted. I fall asleep with TV and light on because I’m not aware I’m going to fall asleep. As I live alone no ne else is here to turn them off. The pain is pretty much resolved on the level of morphine I’m on. I am also on gabapentin and panadol for the pain. I know morphine can cause tiredness but I have been on it before and never in fact in my entire life I have never felt this level of exhaustion. If I have a shower I have expended every bit of energy I had. I purchased a toweling dressing gown at the suggesting of and OT to put onmafternthe shower so I can go immediatey and lay down to gather back enough energy to get dressed. It’s that bad. It took all of my energy to drive a two minute drive go into the sjoo oruchase the dressing gown and drive back home. Mon the way home I went through a drive through and purchased some ready made food because I knew I would notnhave enough energy to prepare anything when igot home. I was right, in fact I was actuallyntoo tired to eat so never ate it! What do it do, I just can’t muster the energy even to get out of bed and sit in a chair for an hour a day doing nothing. This was my plan to try to see progress. It’s definitely nit depression though I’m prone to that. I have amspecialist that oversights that issue and he agrees this is MIT depression related fatigue. He knows me well having been dr of mine for well over 10 years and we have angreat rearionship and I honestly share anything and everything with him. He himself is concerned at the fatigue. At the hospital they said I had chronic fatigue syndrome as well. Having no information about that and knowing nom one with it I’m not sure it coukd be this bad. The total depletion of any energy. It’s like I feel I have nothing left to give at all, I’m running on empty. I don’t feel I’m falling to sleep either it feels like I’m falling into exhaustion. I have nothing else to describe this. I’ve never ever experienced this level of fatigue. Remember here I was working x40 hours a week up until 8 weeks ago, managing reasonably well to cope with pain levels and surviving living alone and doing all of my ownpersonal and domestic chores. Today I can do nothing ore than make myself a coffee, use the Internet from my bed and shower myself ( as described above getting dressed is staged after recouping some energy after the shower by laying down). The ammount of time it takes to gather back the energy to dress after showering is about three hours. Once dressed i am again exhausted to the point of not being able to get a drink for myself so my plan now is i get a cold drink by my bed to sip on after my shower while I’m laying down. Interested on thoughts aand anyone who can shre from their own personal experience on this. Warm hugs all Lindy
As always forgive the Typing errors it seems to be other thing, going back and correcting and re reading what ibe written takes energy and my eye sight has been affected by this flare or why ever is going on. I hope youn get the general jist of what inwas writing about.
LindyLoo. I have never experienced fatigue to the degree that you are right now. I have had bouts of fatigue that seem like they were as exhausting, but never lasting as long as yours. And the other thing is, I have always had help.
I admire your tenacity. I hope you have a good understanding that it will get better. Mine always has. Mine has seemed to hit hardest at my lowest emotional level of strength. Grief, loss, being overwhelmed, etc. It has even hit for what seems like no reason at all, but later I realize there was an underlying stress.
You hang in there. You are doing better!
see if your doctor's will give you a script for a high dose course of (PREDNISOLONE } Cortisone they use it a lot sports injuries, it help things heal quicker and reduces inflamation really get your out off that deep dark hole you can't climb out for the last months it's worth a try even some temporary zoom good luck sweet lady
Hi there
I was to be admitted to hospital and have prednisol administered via a drip but it was decided against because of another medical condition i have I was however putmon 80mg of oral prednisone at the beginning of this flare, this is now tapering off and I am on10 mg the moment. It has arrested the pain along with long acting and short acting morphine and gabapentin. These remain at then high dose but they will probably begin the titrating down of these in two weeks time.
The pain is not an issue any more, it seems to have settled though if this is the prednisone or the high doses of analgesics I’m not sure. The biggest issue for me at the moment is the utter exhaustion I’m in. It’s been useful even writing this as i can now see that things have changed for the better since I first flared, it’s hard sometimes tom see forest for the trees when youre in it! So yes a positive in that the pain seems to be under control. Niow just the exhaustion to come right. I guess that will take the time it takes and repeating my mantra…this too shall pass…
I try and pace myself since I am at home now I do no I feel better if I go out to do small things sometimes. Does the meeting have to be in person could you do Skype
You have such a good attitude, LindyLoo! Yes, this too shall pass. One thing that keeps coming to mind is the morphine. Just something to think about. Perhaps some of the exhaustion will be eliminated as your doctor has you titrate down the morphine. It has to be making you drag. You need it. Yes, you do, but as you get better it may all just shed off that exhaustion. Also, I hope you are eating. Meals on Wheels or Loaves and Fishes will bring you a meal every day since you are home bound. No food = exhaustion. Call you local Aging and Disability Services or Area Agency on Aging. You don't have to be old or disabled to receive those meals.
Big hugs,
Kitty
Hi everyone
Many thanks for all of your thoughts, prayers etc, an update I’m now out of hospital and doing ok. Currently still needing to use the walking frame to move around but my goal this week is to get back onto crutches and only use the frame when I need to move food or drink to mu room. I’m still spending a lot of time in bed but going to attempt to sit up for at least two hours from tomorrow. I’m still very tired but feel I need to start to move myself forward a bit at the same time trying to maintain the current progress I’ve made. I’m certainly not as exhausted as I was nine weeks ago but still feeling huge fatigue. There’s only so long you can lay in bed trying to regain energy. I’m still needing assistance with showering. I have most things set up so I can conserve energy for example I have a bar strok that I use when I’m doing dishes or getting food ready. I’m eating a lot better as I and almost stooped eating when I was at my worst as I didn’t have the energy to prepare anything. Looking back I can see just how unwell I was. But I’m a lot better than then and I can now look forward and see recovery happening. Never as fast as we want it but I now know it will take the time it takes it’s almost impossible to predict timeframes. My dr has said it will be 4-6 weeks until I can start back to work part time working up to full time again. So that’s really it for an update.
Lindy-Loo, the important thing is that you are making progress. That's great. Don't force yourself beyond your limits because that would cause you to fall back. Just be careful how you progress.
Oh this is such good news Liny-Lou.
Please continue to keep us updated.
Hi Lindy Loo!
This IS good news, and it's good to hear from you! Rachel is right, baby steps!
Please take good care of yourself!
Wishing you well,
SK