Very discouraged.

[Karenjaninaz]

Started out last night at 1:30 AM when an ingrown toenail made itself known . It was so painful I couldn’t ignore it. So I got up and tried a few remedies. Successful with liquid bandage - a remedy from my physician cousin. But by the time I was done I was so awake I started to read and actually meditate a little. My husband wanted to go for early breakfast so I stayed up until then went out to eat at 6 am and back to bed for a couple of hours.

‘This is not a good scene for my adrenal issues. Taper to 6.25 from 6.5. 3 day intervals. Not going any further. I feel too exhausted. I am so deconditioned. I have : treadmill. Stationary bike, nustep elliptical in my downstairs and I do use them when I have enough energy. . The problem I just need to sleep during the day. It wastes so much time this sleeping. Because I am on O2 24/7 that also has its limitations. I cannot go outside to walk pulling a tank and those advertised boxes don’t give me enough air except when I’m sedentary driving.

My question. Is it possible to improve my physical condition at 6.5mg pred? I‘ve decided to stay where I’m at so that maybe I don’t have the stress of tapering sapping my energy. And now the time change…

[SnazzyD]

Well that night was a disaster and your tiredness is excused. When I was struggling at this stage I had to reinstate a 2 hour actual sleep, not just examining the inside of my eyelids for a bit. Yes, I felt like a complete waste of time because it didn’t feel like a Power Nap but a get back up to zero nap.

This dose level was also a tricky in between area until I got to about 5mg. Still high enough to keep the adrenals sleepy but too low to feel I was living. I carried on reducing 0.5mg very 4-8 weeks until I got to 5mg feeling useless throughout. The difficult bit in giving advice is not knowing what someone’s body is actually doing and what is best for them. Have you had your respiratory situation reviewed recently?

[Karenjaninaz in reply to SnazzyD]

Yes my respiratory situation is stable. I have restrictive lung disease from scoliosis. I’ve had corrective surgery that gave partial correction. But the residual chest deformity from when I was a kid has come out to bite me in my old age. I have ventilation perfusion mismatch because of this.

[PMRpro Ambassador]

"I cannot go outside to walk pulling a tank"

Why not? I see quite a few doing so here and in the UK. You can get small cylinders that fit in a back-pack. Or since you have a scoliosis - many use a rollator for the cylinder which will also help your walking.

Sorry to hear about the bad night - hope the breakfast was worth it!!

[Karenjaninaz in reply to PMRpro]

I have a rollator fitted with a tank holder. A tank lasts me 2 hours. The small tanks don’t last long enough for the L/min I require with exertion. I did go out in better weather with that. I can walk on my road it’s hilly though.

Now I just need the energy to do it.

[piglette]

Remember you have an illness, so your body cannot be expected to carry on as it did in the good old days. I go swimming as I am supported by the water and I thoroughly enjoy it. If you try and overdo any exercise PMR will just turn round and bite you. So rest, take things easy and of course exercise, but not so that it upsets the PMR.

[Karenjaninaz in reply to piglette]

Piglette, the problem is that I have been at this since 2015 and I’m sick of it. I’m 82..

[piglette in reply to Karenjaninaz]

You are never too old to set another goal or to dream a new dream." —Malala Yousafzai.

[Karenjaninaz in reply to piglette]

True

[PMRpro Ambassador in reply to piglette]

Though I am left to ask what she at 27 knows about implementing them in old age.

[Karenjaninaz in reply to PMRpro]

We can still set goals in our old age, even though they are short term.. as far as dreaming goes that’s a bit of a stretch.

[piglette in reply to PMRpro]

I do agree. I get really annoyed when I watch TV and politicians etc go on about pensioners can always use apps etc and they can “pop” down to the surgery or wherever as if we were still active forty year olds.

[Groggrim]

Hi, I'm on 6.5 from 15 last August. I have stopped tapering for now because the drive to reduce was taking over due to pressure from a particular doctor and we also have some family stress. I feel I can coast a while at this dose and my GP has accepted it. I think I will know when I can pick up the reducing again. There really is no 'one size fits all' with this. We are all different.

[Pixix]

I sympathise. I’ve been on crutches for nearly ten weeks now, no walking since beginning of January & am getting so out of shape. I never thought it would happen so quickly! There’s a guy round here who is on 24/7 oxygen and he has a rucksack with oxygen units & has enough to go for 2 mile walks. Perhaps ask the hospital if there are any lightweight units you can carry so you can, at least, go for short walks. I’m sure it would help you to feel better.

[Karenjaninaz in reply to Pixix]

The only time I can use a little box is when I sit still while driving. They do not deliver enough air for any exertion that I may have. I really wish I could get by with those but I can’t. They are quite heavy; that itself creates an exertion if I would be carrying it. The problem with having scoliosis is that the air does not reach all the parts of the lung where oxygen exchange takes place. This is because of chest wall deformity.

[Pixix in reply to Karenjaninaz]

That’s sad, this guy has got a really great purpose built rucksack, which looks lightweight. I understand that wearing a rucksack with scoliosis isn’t possible, I apologise, I forgot you had that issue. S x

[Karenjaninaz in reply to Pixix]

The rucksack can be worn in the front but the boxes give off heat.

[Pixix in reply to Karenjaninaz]

I saw a guy out at a garden centre wearing an oxygen pack at the weekend. He just had it over his shoulder, looked lightweight. It was nice that he was able to get out, I thought.

[Karenjaninaz in reply to Pixix]

It’s heavy 5+ lbs depending upon model.

[Pixix]

OK for some, but sadly not for others.