MS when it invades your world

MS invades my world“Today is just another day” Just another day when MS when it invades your world… sure someone said that! or something like that, well today  I woke from my lovely comfortable electric bed (sorry for those that don’t have one but I would definitely recommend it). The morning routine started with the normal stuff… unplugged myself from my night bag, David my husband emptied it for me bless him, checked stomach area around catheter first, that’s doing ok a wipe with an antiseptic wipe, the rest of the area looks as though someone has stubbed out cigarettes on my stomach (slight exaggeration) but can’t think of another way to describe it.

Hair Colour

Decided to colour my hair this morning, I’m always trying to change something or another, since MS invaded my life I have had to find ways to do things myself,  so colouring my hair while in a wheelchair is a bit of a mission. So got out of bed and with my Zimmer frame found my way to the dressing table, I’m afraid I had to do my hair without anything on, as once the colour had taken which takes at least an hour, I was going to the shower, shampoo the colour off and wash, with David’s help of cause, which is so much easier than having to take off clothes over my head with bleach on my hair.

While the colour was doing its thing thought I would turn round on my chair and wheel myself to the pine blanket box at the bottom of our bed, I needed to sort out my catheter bits and pieces that we store there, need to take out items no longer needed, I will be given these to the nurse that it coming next week, to change my catheter for a female one replacing the very long male one that the hospital put in.

Catheter Equipment

Had a box delivered this week, has all the new catheters and bags that I now get from another supplier, I’ve spoken about in previous blogs, Manfred Sauer UK Ltd they are so helpful, they sent samples of different bags so I could try, the guy I spoke to is Phil he is incredibly knowable, talked me through what would be suitable and then even called to see how I got on, that’s what I call customer service, I would definitely recommend you call them and ask for Phil,  if you have any concerns or problems.

I choice the 600 ml hip bags which I actually uses as tummy bags,                  I double up the straps they supply to go around my stomach, these       have a plastic zigzag effect on the back of the straps which make it very comfortable, they have extra Velcro on the front that fits to the bag, I tuck the bag under my pants so I can now wear trousers, which I haven’t been able to do with a leg bag, so I’m much happier and I don’t even realise I’m wearing a bag, until I need to empty it of cause.

Sorting equipment

Back to where I was sorting out the blanket box, took out some things and put in a carrier bag to give to the nurse, and replaced with the new equipment that’s that sorted. Now for my shower, David helped me in and I sat on the shower stool, shampoo hair and had a good wash, after falling a few weeks ago in the shower, we now put a towel over the shower lip so I have a grip for my feet, we have a rubber shower mat which is in the middle of the shower, but the towel over the lip/step to get out works, so out I came and was dried and sat on the bed. David put a new dressing around on my catheter, I then went and sat at the dressing table fully dressed this time, to see my new hair colour, oh maybe I’ve over done it this time, wanted to go blonde but each time I’ve tried nothing is strong enough, I’ve got red hair naturally so it’s very strong when it comes to colours, so decided to use the bleach blonde highlight kit I’ve got, but this time put it all over my hair, David said, wow that’s a bit bright, but it’s ok, when your husbands says that you know it’s bright.

Negative to Positives

MS when it invades your world”, I think this title describes my world very well, I feel I’ve been invaded by something I have no control over, this is not because I’m depressed this is just how it is, the only way I can describe the feel is, if one day you woke up and everything had changed, things will never be the same, I asked my husband what I’m I supposed to do with my life now, surely I can’t just sit in this chair for the rest of my life, this I asked as a very serious question not “poor me what am I going to do” I have to re think my life how can I “Turn the negative into the positive”what am I good at, what can I offer and where can I offer it? So that my next quest, think about the positives.

When MS Invades my world

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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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