Discouraged today

[PMRpixie]

Does anyone else ever feel like just taking a shower is akin to climbing My Everest?

[PMRpro]

I used to, well enough now for it not to but it still requires an immense summoning up of will!

It helps to just stand in the shower and not worry too much about scrubbing! We don't get really dirty these days - rinsing off sweat is enough.

Then wrap in a towel/towelling bathrobe and lie on the bed/sit in a chair until you have dried naturally. Then you can contemplate getting dressed. Maybe...

[PMRpixie in reply to PMRpro]

Oh, thank you PMR pro.

Just having one of those days. When you feel like crap with the flu you get over it, but with PMR it just goes on and on.

Just venting (again)

[PMRpixie in reply to PMRpro]

Good idea

Just a good drenching. I'm going to try that. Now if I could wash my hair w/o raising my arms.

[PMRpro in reply to PMRpixie]

I know I'm lucky living up a mountain in Italy with better weather and cleaner air - but I wash my hair once every 2 weeks, 3 weeks after the hairdresser visit! They are horrified here at the idea of daily hair-washing unless you are an avid sportsperson! I started slowly, building up the number of days gradually. You do get a stage early on where it feels yucky but that passes. When you wash your hair every day you are removing the oils that keep your hair in reasonable condition - the body immediately replaces them by overproducing. Cut that cycle - and your hair recovers slowly, producing less sebum and your hair doesn't get greasy. But you do have to be patient at first.

[PMRpixie in reply to PMRpro]

My hair is so dry is hard to manage - from lack of oils. Used to have oily hair. I try to not wash much. Seeing my hairdresser this week. Wondering about a perm but will ask her. I need some body since so much is falling out.

[PMRpro in reply to PMRpixie]

I wouldn't risk a perm if your hair is already ailing - the chemicals often dry it out even more. A good cut is the most important thing to aim for.

[PMRpixie in reply to PMRpro]

Evidently there are a few that moisturize and condition for this very purpose. Yes, I am a bit nervous but my hairdresser has worked for 33 yrs and seems to feel quite comfortable. I'll let you know.

[Hidden]

I know exactly what you mean, Allison. I had my husband install a teak shower chair and a hand held shower wand to make showering a little easier. But I still get out and have to sit again to dry my hair. And forget make up. That's just too much work these days! After dressing there's an hour-long sweat fest. On days that I do dress in real clothes (not the usual PJ's) that's a sign of a good day ahead. On these days, I try to make the most of it and run a few errands. Everything seems to take a monumental effort.

The best advice I've had on this forum (from PMRpro and others) is to pace yourself. Now I spend more time planning what I'll try to do than actually doing it. Like two loads of laundry, sit, unload the dishwasher, sit, make the bed, sit. This way I feel like I'm actually accomplishing something without getting too fatigued. Other days when there's no energy at all, I sit and read, surf the Internet, lay on the heating pad- the low energy stuff.

Hang-in there friend. We all feel your pain. Try to keep a sense of humor about it 😆.

[Rowmarsh]

Yep. If I could buy a 1.5m loofer this would allow me to scrub everywhere without bending over and thus avoid me becoming breathless.

[EOLHPC]

Yes...great discussion: I totally relate to this....especially when am flaring in one body system or another...and it's coming so close to blacking out in the shower that scares me: have had it in mind to install a seat inside my shower, but so far have managed to cope by crouching on my haunches under the spray (much harder to do during the bad decades of chronic joint & soft tissue pain before my infant onset lupus diagnosis was recovered & treatment begun), and crawling out to sit on the loo for ages recovering wrapped in a big towel which does the drying while I pause. My impression is that orthostatic intolerance is part of the pie chart of my version of these shower horrors (haha: I often think of that scene in Psycho)

🍀 Coco

[PMRpro in reply to EOLHPC]

How big is your shower? One friend has a plastic garden chair which is stable and comfortable. Hers is the sort with arms and the shower was installed to make it possible after someone got stuck in the bath. There are smaller ones or stools that don't require the effort of installing a fixed seat - which are actually a bit small if you are very wobbly.

[EOLHPC in reply to PMRpro]

Yes: been dreaming & calculating about this for some time🤔...it's a small shower but built into a wall so solid & tiled on 3 sides...have tended to think I'd have to go for a fold-up seat....

[PMRpixie in reply to PMRpro]

Have done the "plastic chair" in the shower. Actually helps a lot. We are remodeling our bath currently and putting in a small bench. The contractor asked - "for shaving your legs?". I said heck no I just haven't the strength to stand that long - really!

[julsno]

Yes

[lnem]

Yes! Great discussion. I thought it was just me. I keep thinking it's all in my mind and I just need to push through it, but it can be so hard to even jut wash some days. I have a seat ( supplied by health service ) which I would be lost without.

Good luck to all & happy new year xx

[Suzym2u Moderator Vasculitis UK]

John has this problem when putting his socks on - he struggles terribly and is always out of puff afterwards and needs a rest before he can put anymore clothes on!! If we are pushed for time I put John's socks on for him. He struggles with shoe laces too, so we buy Keen shoes ( no laces ). He enjoys having a shower and finds it relaxing but cannot get out of the bath anymore so does not have a bath now. He used to enjoy a soak and listen to music. Yes , we do have grab rails but he still struggles without my help, the weakness he suffers, is in his legs, ankles and feet. He chose not to have a bath anymore to save my back. John has a long handled bath scrubber for his lower legs and feet in the shower and I always cut his toe nails as he finds this job impossible.

[PMRpro in reply to Suzym2u]

I'm nothing like as bad as John obviously is - but I haven't had a bath for 10 years since PMR appeared! I can't kneel on anything hard or pull myself up even with grab handles so getting out is hopeless. A treat is the chiropodist about twice a year now since I can now just manage to do my toenails - while I was on a higher dose of pred my nails were so hard I simply couldn't manage.

The last umpteen winters I've had hot feet and didn't both with socks at all - even at minus whatever, just had lovely furry boots. This winter? They're freezing again! Does that mean the vasculitis is fading I wonder? Though I suspect the problem now is my adrenal glands don't want to wake up however slowly I reduce. Oh well, you can't win them all!

[PMRpixie in reply to PMRpro]

PMRpro...Just looking to win a few. Ha.

[PMRpixie in reply to PMRpixie]

I DO hear ya on that one.

[AndrewT]

Dear Alison,

To answer your actual question, Everest is a long, long way up, and yes I feel like I have climbed it-often twice-quite often!

Happy New Year anyway, happy mountaineering!

AndrewT

[missgobby]

after I have climbed Everest (stairs) I then have the task of climbing in the bath to shower then have to do everything one handed while holding on to the grab rail would give everything to have a walk in shower

[PMRpro in reply to missgobby]

Are you in the UK? I wonder if you could get assistance to have one put in. A lady on another forum with PMR had a shower put in because she couldn't use the bath - she was in a flat from a housing association but there may be grants to assist with disabled homeowners on a low income, I don't know. The first thing I insist on in a bathroom is a walk-in shower. If there isn't room for a bath as well there are walk-in baths but neither of us ever have a bath so I wouldn't bother.

[missgobby in reply to PMRpro]

Thank you for ur reply yes I'm in the uk and I'm in a housing association house I will really look in to this as it the main that can help me day to thanks again for replying x

[PMRpro in reply to missgobby]

Be persistent - and when they come to assess you or ask questions don't describe the good days - describe the really bad days! If you cannot climb into and out of the bath you are left with the option of a strip wash - this is 2016 for goodness sake! Don't forget, it is not just the exhaustion aspect, balance is just as important so tell them you don't feel safe standing in the bath, never mind the process of climbing in and out. Say if you sometimes go to a friend for a shower.

You may also be able to get grab handles or a proper handrail (one on either side of the stairs is a great help) if you have stairs to negotiate. Not sure about help with a stair lift - that may also be something to ask about.

The lady I know had to wait quite a time but was so excited when her lovely shower was finally installed! She was very apprehensive about the assessment but was very pleasantly surprised when the assessor said immediately that she obviously was unable to use a bath, shower approved.

[BronteM in reply to PMRpro]

After more than four weeks of strip watching, I can tell you that it is the most exhausting way of washing, far worse than a bath or a shower. And takes you straight back to youth hostels/boarding school/cadets or worse. My best at the moment is being helped in and out of the bath by my husband as we have an overhead power shower and being totally drenched is also tiring. Difficult if I was on my own, but feels quite safe with help. And, for me, has a shorter recovery time.

[PMRpro in reply to BronteM]

Tell me about it! I was in hospital a few years ago and couldn't shower because of all the bits attached but I wasn't helpless so I got water and a flannel to DIY. I gave up quite quickly! That first shower was bliss!

I think I'm fairly lucky - we have a walk-in shower, I wouldn't consider not, even if it meant no bath - but we also have a bath that has a very broad corner and is very close to the loo. When I had a torn knee ligament, I could sit on the loo seat first and transfer to the corner of the bath and then lift in one leg at a time. With the shower curtain behind me I could stay seated and still shower, even wash my hair, without flooding the place. Not that it matters - tiled floor and concrete underneath, can't leak! The showers are from the mains and - unlike in the UK - when on full blast will beat even a power shower but they are very easy to regulate.

[nicholls]

Yes. Major effort all round then have to rest afterwards as completely exhausted xx

[PMRpixie]

Thank you everyone. Sometimes I just want to be normal once again. Hardly remember how that feels. When everything I do is exhausting it's hard to be motivated. But when I hear all of you with the very same experiences I just sigh, smile and "carry on". Than I can say to myself - Maybe I'm not crazy after all ??

[KirstyW1999]

Thanks for making that comment Alison and all the above. I have good days then really bad days.

Now I dont feel crazy at all.

[PMRpixie]

KirstyW - Us crazies have to stick together. Otherwise we would actually think we ARE crazy. This "brainfog" contributes to the confusion of daily living too. It's not hard to dissolve into tears sometimes. I always pray for those around me (spouse) to PLEASE understand - I don't want to be like this - REALLY!!

Take care!

Alison

[orsen-trapp]

Aye, and just about as cold as I shiver outside the curtain waiting for the thing to come to a reasonable temperature! Bath for me every time, unless there's no choice!

[PMRpro in reply to orsen-trapp]

Bath every time? You've obviously never got stuck after the water has run out! You get even colder then believe me!

Warm bathrobe until the last minute, chuck it on the toilet seat so it's there for when you get out!

[orsen-trapp in reply to PMRpro]

A looong soak to ease the achy bits, topped up at least twice with scalding hot water from the back boiler as it's an old enamelled steel bath with no insulation in an unheated bathroom (unless you count towel rail). It has nice thin side so easy to get my hands round and if need be I can use the taps to haul on as they're attached to steel rather than plastic. I don't let the water out until I'm out of the bath. Obviously husband helps if I'm really bad. My 84 year old, very lightweight, mother - who broke her hip last year, still helps my 89 year old father (heavy build) with his bath but I think they now have one of the many gadgets available to help with getting in and out. He feels the same about showers as I do! Mum has baths too. The bath is where I can think uninterrupted, solve practical problems, write. A shower is just such frantic, brief, hurried, tiring thing - and doesn't get me as clean, especially the soles of my feet.

[PMRpro in reply to orsen-trapp]

No - I stand in the shower with the water on my back and enjoy it! None of this nonsense about 3 min showers!

Write? I can't take a computer into the bath either...

[orsen-trapp in reply to PMRpro]

I write in my head - the ideas tend to come to me in the bath or when doing tasks that don't require much thought - then note it down in a notebook. With a pen.

[PMRpixie in reply to orsen-trapp]

I would love a nice warm bath too but there's no way I can get in or out. Muscles are just too weak anymore. Changing to a walk in tub isn't an option.

[orsen-trapp in reply to PMRpixie]

Can your local OT not come up with a bathing aid to help with getting in and out of the bath? Must be something available as not everyone (even in this day and age) has a shower. My parents don't, for a start (but then they, like us, don't have central heating either so maybe we're all just plain odd by some standards!). I've seen a few things advertised (with modest ladies in swimsuits demonstrating!). Personally, I found baths easier than showers when my muscles were wasted (and had had a few showers where I sort of 'came to' as I swayed against the walls!). In theory I could drown in the bath, of course, but I haven't yet, despite falling asleep