Finding baseline

Emmarose47

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Hi all
So after getting more stable end of summer via pacing I then went out and did some activities that whilst were amazing at the time took me down ..
I've been housebound since Nov ...
Happy to say the past few days I'm getting low symptoms and keeping up the pacing and resting ..
I've been through such distress not being able to be in the community and last yr I was in a cycle of boom and bust and in bust was struggling a lot with being restricted .
Have I learnt my lessons umm we'll see ..
I'm asking for people's positive experiences around being in lengthy crash regaining some stability and then increasing activity and being able to maintain ...

I'm hoping there are some stories of this here 😃

I feel relief that even through the want is still there to get back to the community in some capacity I'm more accepting and dare I say normalised around being semi bed / house / garden bound ...
Maybe comes with longevity ..

Have to say through fatigue also breeds fatigue for me so it's that mystery line of making the best of body , mind and spirit whilst keeping close to baseline ...
Slow moving out and not waking the baby ! 👶
 

lenora

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Hi @Emmarose47.....I guess the first place you have to start is trying to do something rather simple like going out for lunch with a neighbor or friend. See how your body responds and how long you can withstand the outing. Coming back I've always found to be a series of small steps forward.
I've probably had three returns and am now working on my 4th (fractured pelvis at the moment). The first two occurred in the early years of the illness, and the first was especially difficult. That's expected in retrospect.
I was told to walk each day....and I did. Was it hard.....oh, unbelievably so and I had been a walker and bike rider before I ever became ill. I was recovering from a neurological surgery and had two separate viruses....the beginning and I have to say that my PT recognized the symptoms of CFS/FM and I was also diagnosed by some of my doctors. At least I had a diagnosis in hand and for that I'm grateful.

I was ill during one period of PT and noticed that the less my body was worked on, the better off I was. I told my therapist this (myofascial therapist) and she immediately made note of it. As a result. the no. of days of therapy were reduced and I very slowly started to gain strength. I did continue to walk as much as possible, although household chores and extra help with our daughters was taken over by my husband. A walk and a shower would send me right back to bed each day....but I continued along that route. I hope I have the stamina to work hard to come back this time.
If you don't have pain, you're in a much better position.
I had to face up to the fact that my nutrition wasn't the very best. I simply didn't want to eat and lost a lot of weight....this came back to haunt me in my later years. So, eat well...nourishing foods and yes, they can be hard to think of offhand, that's why a list will be handy. It's all too easy to become hungry and search for a bag of potato chips. I had to totally change my thinking.
Having family or friends that you can be open with can prove to be a great help. Groceries can be delivered as I found that to be an onerous job and quickly moved me back again.

Be careful of your exercise as I found that doing too much could also send me back to serious recovery again. I've noticed that men who lift weights are often faced with that....but yes, it's my observation only.
My world has become smaller but then I'm a lot older.
Don't forget to be nice to yourself. What do you especially like to do?....I noticed you're a gardener, well I love nothing better than settling back with a seed catalog in the spring.

Really, Emmarose....pretend that you're a small child who has been ill and treat yourself the exact same way. You deserve the attention and any child wants to return to at least some of the world. If you have a relapse, tell yourself that it happens (and it does). You know how you feel....don't let anyone pressure you to do more than you can take. Best of luck. Better health. Yours, Lenora.
 
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hapl808

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I don't have much to suggest, although I do find it weird that fatigue breeds fatigue, as you say it. If I lie in bed all day, I'm exhausted. If I talk on the phone a bit, I start feeling physically and mentally better, but then some level of PEM is the result. I wish I knew what I was doing with HRV. If I have the patience to lie in bed and do nothing at all for a week (when I can get away with that), then my HRV improves but I still feel awful and exhausted. But then when I do something mentally challenging, I have a higher PEM threshold. So I guess if I rested for a week before each phone call I'd probably be in better shape, but that's not much of a life.

I'm just rambling. I've gotten pretty used to being housebound, but the constant crashes even housebound are very discouraging and I can't seem to figure out how to avoid them.