Me and my mate MS

My new addiction, everywhere I go!   Here I go again  I really thought after my experience eight years ago I was done with pressure ulcers but alas no. What I do know is it’s impossible to legislate for third parties (idiots). My first one was as a result of not being turned regularly in bed when in hospital. Thank goodness I haven’t had a stay in hospital since when all the necessary precautions haven’t been put in place. In April this year we were lucky enough to fly to Perth Western Australia with SMD and her partner to see my best friends and go to their daughter’s wedding. The day came we had decided to use Disabledholidays.com and fly direct from Heathrow to Perth. But what we never considered was it would be ‘Disabled Assistance’ at Heathrow Airport that inflicted the damage to my skin that has resulted in a Pressure Ulcer. At the airport we had pre booked airport assistance, the team responsible only won the contract two months before hand and they had never had t...

  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...

  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 ...

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...