How are you coping with MS?

How are you coping with MS?

I wrote about MS in some detail last year, but wanted to go there again as a lot of you have read and commented on the post, so through an update was due.

MS is a complex and complicated condition, from Relapsed and Remittances Multiple Sclerosis (RRMS) Secondary Progressive Multiple Sclerosis (SPMS) Primary Progressive Multiple Sclerosis (PPMS) and all those in between. So as you can see the variety and verity is quite enormous, I personally have SPMS, but since I was first diagnosed in 2013 my Progression has speeded up quite rapidly, I have gone from working, walking, driving and for filling a useful role as a mother and wife, able to do many things that just had to be done, like house work, washing clothes, plus many others that I really enjoyed such as gardening and my passion cooking and baking, sadly none of which I now can do as my mobility has gone to pot and I’m not safe in the kitchen any longer.  so today I’m the old woman sitting in the chair and my dear husband at 63 has had to take over the household tasks, as well as caring for me.

I was interested to see on tv the other night I think it was a Panorama item were they showed that RRMS could be helped with stem cells, they treat a person with RRMS with a cancer drug chemotherapy which kills off the bad cells in the body, before killing off all their cells they take out some good cells and freeze them, until after a period of time when the body is able to have the good cells placed back in they body, defrosted of cause, they then grow and form new cells which repair slowly the lesions in the body. That is how I understand it, simplified I know but hopefully you get it. I realise it only helps people with RRMS so I’m not in the group of people who can be helped AT THE MOMENT but how fantastic that this is possible, if you haven’t seen this program yet try to get  a look on iPlayer.


I thought I would give you an up date on the equipment I have at home to assist me, first the stair light that’s working well so no problems there, the only thing that worries me is even though the council paid for the stair lift and installation they don’t pay for the maintenance which is £600 a year, we obviously can’t afford that, so after the first year manufacturers guarantee which runs out in September don’t know what we will do if the thing goes wrong then, well we will just have to hope nothing goes wrong.


I was so looking forward to getting the electric bed, when it arrived and was assembled it looked fabulous, two separate beds in one base so to anyone looked like a super king size bed the same as the bed we had before, we had to buy single sheets which I purchased I bought fitted sheets as I thought these would work better what with my bed able to change position i.e. head, middle and legs could be raised, but as it happens it would have been better to get flat sheets as each time I move my bed the sheet pings off the bed and my husbands sheet moves when my bed moves, well we had no idea had to try it out first so will try out our flat super King size bed sheet before we invest in new sheets, we still use our super King size duvet that works well, thank goodness we didn’t have to buy single duvet. The other worry is every time I move the bed make one hell of a noise like the slates are breaking, David has checked and the slats are still there no damage(at the moment) I’m just waiting for them to break, David said well if it breaks they will have to replace it, but the thought of the bed breaking during the night and me going through the slats doesn’t bear thinking about. Will have to call them and get someone round to investigate, I think the worry I have is that they will say I’m too heavy and didn’t tell the truth about how heavy I was when we orders the bed.


These do need clean as you need to clean the toilet under the seat, very surprised how dirty the underneath of the seat gets, The only way I’ve found to clean and sanitizer it probably is to put it in the shower tray with a good amount of bleach and leave over night, my husband in the morning sprays the bleach off with the shower head, that cleans them really well, they do need drying with a towel but they come up really clean and smell much better, I can then clean the toilet from my wheelchair while the bleach does its job. The only down side I’ve found is the bleach seems to weaken the hook that sits on the front of the toilet stopping the seat slipping back on the toilet and it does squeak, not sure if it’s the plastic or metal, I expect it’s the plastic which looks as though it has a fine crack in it.


My lovely red wheelchair I’ve named Zippy had a bit of a problem, I found it very difficult to turn corners when wheeling myself, David also noticed and said in his normal forthright way, (they will have to come and bloody fix that) which of cause they did. Great service came out the next day and fixed the problem, they didn’t even ask what the problem was, but my husband was there with the service guy, he does love a chat bless him. So that’s the latest so far, will keep you updates.

Lots more to tell you but think 1000 words is enough for this blog, keep well and sign up to my email by adding your email address, plus please do pass on the site details to friends and family, and add me to your social media accounts. All the best AL
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New Electric Bed

New Electric Bed

New bed is here

Well it’s Friday and two vans with delivery guys have arrived, one van is to take away our old bed, one van has our new electric bed. So the first problem arises, we live in a chalet style house, and what with the tight small stair case which now has my stair lift fitted, and low over hang to the ceiling and a very narrow front door, they are having trouble getting the new bed up the stairs, the pictures have been removed from the walls in case they get knocked, my husband did dismantle our old bed this morning and stack it next to the upstairs wall ready, but to get it down stairs the guys will have to use a saw to dismantle it, it originally came in through an up stairs window which was taken out when we moved in to take furniture up stairs.

The hoover has now gone up as I’m sure the sawing has made a mess (think I need tablets to calm me down, if only I still drank) tea and coffee break upstairs and scratching of heads by men including my husband (he does like a drama) as to how they would get the rest the old bed down?

More sawing and now hammers, (getting a headache, still have pills for that) bits of new bed base going up, (I’m sitting in the front room on my rise and recline chair, watching men going in and out of the house) now drill in operation to connect the base of new bed together, more hovering (Nice to know  they are cleaning up after themselves)

New bed in our bedroom now and looking better than I hoped, my husband took a picture for me on my tablet, saving a journey up stairs, he will make up bed shortly and I can see it in all its glory. Looking forward to a demonstration of how it works when I go up to bed this evening, I hope I have a good nights sleep tonight, a new bed that you haven’t tried is taking a risk but we couldn’t try before we bought the bed, or should I say before the MS Society bought the bed for me (thank you MS Society) I will write and thank them personally with a photo tomorrow.

Last night had a great sleep, the first time in a long time, I was able to raise my head and legs into a comfortable position at last. My husband didn’t sleep very well for two reasons, said the mattress was a bit hard, but he will get use to it, and my snoring, unfortunately I can only sleep on my back at the moment, until the tube from the Suprapubic Catheter heals, then I should be able to turn over or alternatively I could buy him a pair of ear plugs, anyway that’s my new electric bed experience.

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Suprapubic Catheter

Supra Pubic CatheterSuprapubic Catheter

Suprapubic Catheter finally in place: I went in to hospital yesterday at 12.50pm and was given a general anesthetic at 1.30pm. Arrived in recover and woke at 3.30pm, then I was wheeled back to my room at put into bed at 4.30pm; I was given a ham sandwich, yogurt and coffee. The Surgeon came in said all went well but glad he did the operation under X-Ray because my bladder wasn’t quite where it normally should be; instead of being on the left it was central and lower than normal… but no problems, Suprapubic Catheter inserted ok- He did have to use a number 5 drill bit to get through all the fat 🙂 Not really … he didn’t.

I asked if the whole would shrink as I lost more weight, he just smiled at that question but said he had put dissolvable stitches in the wound, and a dressing was put around the catheter, he told me not to get the dressing wet, or clean or redress the wound for about three days.

The compression stockings they gave me (don’t match any outfit I’ve got but never mind) should stay on for a week, to avoid DVT  (deep vein thrombosis) then the pharmaceutical guy came in to give me a weeks supply of antibiotics and the nurse gave me some extra dressings. I was dressed by my husband and then was very pleased to hear that I was to be discharged because the procedure went well with no complication.

I thanking all the nurses as I left the hospital… We got home at 7.15pm and enjoyed my freshly cooked salmon salad my darling husband then cooked for me. I slept really well considering what I went through, but I think getting rid of that blessed hanging Indwelling catheter made a huge difference – now all i have to do is get use to the new routine.

Day one with new Suprapubic catheter: I gingerly took a look under the bedclothes to make sure nothing had happened overnight and to my great relief everything was still in place no leakage, night bag still upright and connected. It is a very strange colour though colour of rosé wine, (not for drinking of course it must just be blood and medication) it does make you think what’s in rosé wine though! No not really that’s just my sense of humour or maybe still the effects of the general anesthetic.

Anyway I had to work out how to get to the bathroom still attached to the night drainage bag (decided to keep attached till I worked out how to ware the hip bag) so put the night bag on my tray on my Zimmer frame and taking it easy and being careful not to slip with my new support stockings on; managed to empty it in the toilet and sat carefully down and placed bag on its frame on the floor, got up carefully holding on to the support rail by the toilet, the sink and got to my feet and put the night bag back on the Zimmer frame and went and sat on the bed.

With hubby’s help put the Velcro strap around my waist and attached the hip bag to the catheter, got dressed and went downstairs with the help of “Mario” my friendly stair lift (those that know me are aware I have to give my equipment names) it was a real joy “something you may find a little strange” to not have something sticking into me when I sit down, simple things ah!

Little leakage from my urethra when I bent over ,called the nurse (which she told me to do if I was concerned about anything) she said that as my urethra had not been sealed up completely, a little leakage might happen, this was quite normal as the Urologist would have inserted the catheter as lower down in my bladder as he could, but would not stop leakage happening completely, she suggested I just wear a pad just incase. She reassured me that everything was fine. I still would highly recommend anyone thinking of up grading to a Suprapubic, go for it hopefully you will have the same great experience I have had.

Electric Bed coming Friday.

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Suprapubic Catheter




How MS affects my day


To day I thought I would write a post about  how MS affects my day… It might make an interesting read to tell everyone what it takes to get me through the day, starting from first thing in the morning ; the help I need and get from my Husband and the tools and equipment I couldn’t do without.

First thing in the morning, my husband gets my walker (Zimmer frame) and I use the grab rail by my side of the bed, on the wall to pull myself to my feet, I need help to get to the Zimmer frame (my walker) and then I get into our on-suite, and either take a shower; with hubby’s help to get me in and sit on my shower chair.  Holding on to the grab rails wash my hair and body, he helps me out and he gets the chair out, while I stand and hold the grab rail. I  then very gingerly step over the lip of the shower base whilst holding on to him and then get out sit on chair and he helps me get dry, or on those days I don’t shower (it does take a lot out of me), I have a strip wash while siting on the toilet which has a seat raiser, and pull down grab rail, we are lucky that the sink is next to the toilet,  so I can reach the sink while sitting on the loo.

Once dry and with the walker and grab rail manage to get up, I get back to our bed, where my hubby picks some cloths and helps me to get dressed, I brush my hair and use the walker to get to the top of the stairs where I sit on the stair lift… I named him “Mario” because  after going round the corner of our stairs slowly, he speeds up on the straight, and then starts slowing down again at the bottom round the banisters to the ground.  Hubby gets my walker ready and I use the grab rail , and he helps me to my feet, I walk with the roller to my raise & recline chair where I sit and lower the chair, turn on the air cushion pull over my “over the chair table” and hubby brings my breakfast;. Normally I have a small bowl of muesli, coffee and water bottle to take my first load of tablets, 7 in all.

Daily Equipment

After breakfast I put my makeup on do my hair then I’m ready for the day. By then I’m exhausted but check my emails, and blog to see if I have to reply to anyone. I spend a couple of hours writing my next new post and I then email this to my Editor, who is my younger sister in Australia. She checks it out and adds her artistic flair in the form of diagrams, pictures or photos;  she has a back ground in graphic design and does a fantastic job, her input  bring my posts to life and she has a funny way of choosing exactly the right image to describe my feelings in a picture format. We are a great team really.

When she is happy with what she has done she then emails the post back to me and I check again that I’m happy… when we are happy that all is as good as possible  she presses the button and launches my post into cyberspace for you all to read…it’s a lot of work but so worth while, and by reading your lovely comments I believe you think so too.

I would like to take this opportunity to thank all of you who have sent me your comments. The blog has become such a big part of my life and I’m not sure what I would do without it.  I have been fortunate as recently a couple of International  MS Society have seen my blog, and have ask me to be a monthly guest writer, so that takes up a few more hours a month, many people seem to enjoy what I write, which has come as a great surprise to me, because most of my life I have been told that I was no good at writing.

I know my spelling has improved with the help of spell check, but my punctuation hasn’t, that certainly one of the important jobs my Editor does for me, adding punctuation to my articles… She (my Sister) explained this to me the other day –  she said that when I write I need to breath… and every time I take a breath I need to use some kind of punctuation 🙂 the vision of her reading my 700-900 word posts without a breathing spot made me laugh and I can just see her sitting there all red-faced  and gasping for breath after reading my posts with no punctuation :-). Anyway I think my writing has improved and my Husband says the more I write the better I get.

Thank you Darling, praise indeed coming from you.

Amazon Lady Global Meeting

About twice a week I call my sister and we catch up and have a good natter… the Amazon-Lady Global meeting. I also call my Mum on a weekly basis just to check how she’s going. As my regular readers would know all my family live in Australia. My mum has started line dancing classes and goes to the  gym three times a week plus daily walks, she also works once a week as a volunteer at her local library   at 78  she has a very healthy and active life style and I I’m very proud of her.

By the time I’ve done all that I need to empty my leg bag, so a trip to the loo is on the cards, so off I go with my Rollator, being careful not to fall,  and its normally lunch time by then and time for more tablets as the first lot have now worn off. Well that’s a typical morning for me. Time for lunch, what does the afternoon/evening hold? Hope you enjoyed reading about How MS affects my day.

Until next time… bye for now AL

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