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I should be happy

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  A week ago I took delivery of my new chair from wheelchair services in Hampshire. As with any NHS service the wheelchair service is underfunded and that is the main reason for the inspiration for this week’s blog. My story starts in 2021 after we had moved to Hayling Island, I received my referral to wheelchair services to discuss a new wheelchair and attend a sitting for the specialist seating. I remember being so impressed with the level of service, everything was done onsite even the initial carving of my seat. Original carving in 2021 This seating worked perfectly until I put on weight and because of my water retention I got even bigger. I was told by my doctor that due to the sedimentary nature of my MS I should expect my increase in weight. There is nothing that can be done now that I have complete muscle wastage. I hate the way I now look the worst is at the hairdressers when I have no choice but to sit and look at myself = apologies I going off topic. Anyway back to the m...
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International continence week

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  There are times in my life when I think it’s time to be open and honest about how things are for me. On my feed came up that it’s International Continence week 2025 this week. Below is the website that is full of tips and tricks of ways to manage your continence. https://wfipp.org/event/world-continence-week-2025/ Now back to my own continence, it’s been a gradual precess, as regards to the various stages of help I have needed and continue to need. My District Nurse has always played an integral role. Unfortunately at the time I was diagnosed to have MS (the late 1990’s) it went without question that I would need assistance regarding my continence. It started with trips and falls when trying to get to the loo, there were plenty of times I failed and I had my fair share of accidents which always resulted in a change of clothing. My District Nurse suggested I had an indwelling catheter which I had for abut six years Diagram of a indwelling catheter     I had my ...
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MS getting out and about

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Don’t right me off yet just because I have MS,the importance of getting out and about are my two mantras. When my hubby and I moved to Hayling Island we met with the Care Coordinator who asked me about my care needs but also what I liked to do during the day, when I told him he was somewhat surprised. Although our days out are not as adventurous anymore we still like to get out and about. Hopefully you might even get some ideas as you see some of the places we visit. I must admit now I have a supra public catheter it is so much easier however we don’t go anywhere without an accessible toilet due to my stoma and the need to regularly empty my bag. A recent day out was inspired by an article on our local news and although an hour away we thought we’d give it a go. The tulip fields near Crawley. It was a beautiful sunny day just perfect for The Tulip fields. We didn’t know what to expect, at the entrance they had set up a market place which included the history of tulips. I had no ide...
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Challenging times ahead (Part Two)

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  Now out of hospital, I could settle down and get back to my normal routine - wrong! My usual run of appointments started, first being my visit to the respiratory physiotherapist. My neurophysiotherapist thought that a cough assist would help, I had tried using one last year when I was in hospital with pneumonia and my ability to have a good cough and got worse. At the appointment he decided to provide me with my own portable cough assist.                                  A really good compact size  It’s also very easy to operate although for me I require hubby to set it up for me. The machine requires a mains connection and all I need to do is take a deep breath and then cough. The cough assist will give the reading of my peak flow. 3 seconds later it’s all over and all I need to do is continue by doing it twice a day, another thing to add to my routine. No sooner had I come out of hospital ...
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Testing time for my MS (part one)

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  I have come to the conclusion that it’s a good thing that I can’t see into the future. This blog will cover the first six months of my rollercoaster of a year, because it covers a large of time I will write it over a few weeks. Christmas 2024 is when it all started, I didn’t feel quite right and I saw the doctor who was rather unsure of what it was. So home we went, but lo and behold I ended up in the early hours of the morning phoning 999. Safety in A&E the doctor started by doing a blood test. The test came back showing that my infection markers were 400 (they should be between 4 and 10). I required further blood tests but typically they struggled to find my vein knowing I needed a cannula the decision was to guide me cannula in by ultrasound. The doctor came to the conclusion  that the infection was either inside or outside my brain . It was probably a good thing I was completely oblivious to my surroundings. While the doctor tried to ascertain what was causing i...
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