Well bathing yes those were the days of wiling away an hour in a nice warm bath after a hard days work. Just bliss. How can something deemed essential and normal for human beings be such a chore for some of the people living with Multiple Sclerosis?
A little known fact about diagnostic testing for MS in the 19th century was believe it or not the humble BATH.
This involved lying in a bath of warm water. If this caused or worsened neurological symptoms, it was taken as evidence that the person had multiple sclerosis.
If only I had known that particular gem way back in 2000 I might have had more of an inkling on what was going on with my body.
I can remember saying to my husband, “can you be allergic to hot water”? He didn’t think one could be but still I felt that I was. Every time I had my bath when getting out my legs would be burning and itching and overall I felt wiped out. Scratching my head not a clue as to why even to the point of using less hot water, and sadly no more bath salts. This did not cure this weird phenomenon.
I pushed through and continued to wile away my exhausting days in a lovely warm bath even though I knew the consequences.
Then came the day suddenly well I couldn’t get out of the bath. It was a weekend Sunday morning I loved to have my soak on a Sunday makes you feel clean in and out. Lying there just thinking about all the things one had to do the week coming up. The time came to get out of the bath, but I simply could not. I was literally stuck hit by an overwhelming fatigue so bad I literally could not move my body.
To say I was scared was an understatement. No matter how I tried to vacate that bath I simply could not. I called Mike who luckily for me was only in his CB radio room playing on his radio. He came rushing to me as obviously he could hear the panic in my voice.
I was almost crying at this time, trying not to panic. “I can’t get out of the bath” I sobbed. He looked at me credulously and immediately grabbed hold of me trying in vain to pull me up, of course I was wet and slippy and he wasn’t the strongest of people and he lost the grip and went flying backwards.
Thankfully he didn’t hurt himself, but it sadly didn’t help me, I was still stuck there.
I literally had visions of burly hunky looking firemen coming to extricate me from the bath hum nice abs floating in my panicked mind but that vanished as normally they would only attend for a stuck toe in the tap and i wasn’t about to do that.
In blind panic I pulled the plug out at least if got rid of the water I thought it would help perhaps. The water swirling down the drain until it was all gone. I lay there naked, tired frightened and exhausted.
As my body started to cool down I felt better, and said to Mike let’s try again, he dried me off a bit and then supporting me with his hands under my armpits and me kind of lifting myself up we managed to get me onto the rim of the bath. I tell you it would have made a fabulous video. Two people grunting and groaning trying to extricate me from a bath.
Finally, with a huge effort I got to the bedroom and just flopped on the bed the fatigue so overwhelming all I could do was just lay there gasping like a stranded fish. It took about 30 minutes more or less to feel better, and I could continue getting dressed albeit a lot slower. I realised then that some how my illness whatever it was some how was impacting on me taking a bath, how odd. That was it for me, no more baths. I wasn’t about to go through that again.
We had an electric shower and my next time for bathing was under that.
Now the weird stuff started. I would have patches on my skin which I couldn’t feel the jets of the shower head. What was that all about. I even had to have a cooler shower as again it would make me a bit tired.
I think it would be easier for me if I just skipped bathing altogether but not sure my work mates would have appreciated that. Mind you I would have had more energy.
This phenomenon has actually got a name. Uhtoff’s Phenomenon
Its the worsening of neurological symptoms in multiple sclerosis (MS) and other neurological, demyelinating conditions when the body gets overheated from hot weather, exercise, fever, or saunas and hot tubs and baths.
Well that made a whole lot of sense to a lot of things happening to me. Hot baths out, sitting in garden in the summer out, being in too warm a room out the list was being added too all the time.
SO if anyone with MS is reading this and wasn’t aware of the connection now you do. Those of you without MS if your friend with MS is a bit ripe its perhaps because they don’t want to waste all day recovering from a bath or shower.
To cope with this activity in daily living with MS you can adapt your bathroom. If you struggle to get out of the bath in the United Kingdom you can have an Occupational Therapist assessment for a bath lift, or chair, and yes hand/grab rails. If you have a shower you can also be assessed for shower seats or stools. (Subject to financial assessments).
If you have a disability in the United Kingdom and need to change your bathroom for arguments sake for a wet room, you can get the materials VAT free, which is quite a saving. FINANCIAL HELP IF YOUR DISABLED.
I wish Mike and I had known that as we had to pay for a new shower cubicle and removed the bath, as it was so much easier for me to cope, and I felt safer if I had to have shower when Mike was out. Even then it would take me time to recover and as my time with MS has gone through the years and more progression, then so has my recovery from a shower got longer and longer.
I know if I move now I will have a wet room installed, which will be so much easier for me.
There are many aids to help us with bathing these are just a few probably the most important ones. I find a lot of my mobility aids from Betterlife Lloyds Pharmacy, they are very reasonable and dont forget you can purchase VAT free. The Internet is full of shops selling mobility aids for bathing.
Activities of Daily Living – Bathing also includes hygiene activities such as shaving, washing face, brushing teeth and hair.
Again there are a myriad of things you can get to help you. If you are struggling with any of them, ask your GP to refer you to an Occupational Therapist, or ring your local Adult Social Services who will visit you and do an assessment on your care needs which will include all six ADL.
- Walking or moving around
If any of my readers suffer with Uhtoff’s phenomenon whether with MS or another similar neurological disorder keep a bottle of water handy. Lately there has been more information about how to deal with this phenomenon and it can come down to simply cooling your core temperature down by drinking cold water or drinks this is useful also in exercising when our core temperature will rise. I do that now after a shower and it does help me to some degree. Drinking Cold Water improves exercise tolerance in multiple sclerosis.
In my journey with MS I have noticed over the years normal things I took for granted are slowly disappearing from my life. Its not enough punishment for me that I am now not able to drive, take my dog out for a walk, cook like I would like too and not just BING the microwave, it also takes away a simple pleasure like bathing. So all of you out there enjoying a nice long soak in the bath please have one for me.
Candles, glass of cool chardonnay and some really lovely smelly bath salts absolutely bloody bliss. What I would give to be able to just do that, something so so ordinary.
Remember before you spend your hard earned money on Christmas presents or birthdays ASK before you buy if the recipient is to be someone suffering with MS. It may seem a really lovely thought to buy someone like myself bath salts or bath sets, but sadly it will just gather dust on the bathroom window sill.
Whatever you do when bathing be safe. Remember flooring can get slippy, so have anti slip mats on the floor, in your bath and in your shower. Grab rails are essential and a small stool or chair in your shower where you can sit down. Its dangerous to stand up with MS in a hot shower, and most of you know that. I have nearly sent myself through the shower screen before now simply by looking up and going dizzy. I never did that again.
Thanks for reading this and I hope it has been helpful. Please leave comments and tips which you think might help others with bathing.