Awkward issues this summer
A mixed summer – blue sky ad dark clouds
The summer of 2025 will be remembered for so many reasons. Lets start with good memories and this summer has given my wife and myself some truly memorable ones.
- A recent holiday in Milan and Lake Garda in Italy when we met up with our son and his partner for 5 wonderful days. Tim and Liesl live in Sydney so this was a very special time for all of us.
- In July I managed to get my battered 10 year old FES (Functional Electrical Stimulator) device changed for a new one. So I stopped falling over several times a day and my walking is improving
- The weather was glorious.
- The builders have almost completed the work on our small bungalow, hurray.
Awkward issues
Not every cloud has a silver lining and the MS cloud certainly got a bit darker
- There was a time when I thought I was going to become a full time wheel chair user but thanks to the new FES I dodged that bullet. The wheelchair now lives in the garage.
- I caught a summer cold that turned into a ghastly cough and sore throat and at one time I was convinced that it was going to turn into a swallowing issue.
- In August poor MrsB had to have emergency surgery to resolved a twisted gut problem.
- When the Italian holiday finished MrsB ate something that did not agree with her. The GP eventually diagnosed the problem as salmonella. There is no magic antibiotic, just wait for the immune system to kill it off, it lasted almost two weeks.
The ups and downs
Everyone can relate to the ups or good moments. A good holiday and sunny weather makes people smile. Now the builders have almost finished their work our little bungalow is available for us to enjoy. The tricky issues are harder to understand and each one has unique problems
Using a wheelchair full time certainly would certainly help me to move around the bungalow more quickly and easily. Numerous other aspects of my life would become so much harder if not impossible. For example not walking would turn my life upside down.
My wife had a really tough summer. We all assume that our guts will not cause any problems. Twisted gut is not a regular everyday problem and the hospital were slow to diagnose the problem. I vividly remember a WhatsApp message from her just before going into surgery. She said there is a 2% chance of death or a 5% chance of a colostomy bag. I am pleased to say she survived without either of these events occurring. Salmonella was just the icing on the cake.
Dark MS cloud
Over the last 15 years the problems have significantly deteriorated . Before 2010 I considered MS to be a mild inconvenience. That year was a turning point. I finally had to admit to myself help was essential and I bought the first item to make my life easier, a Travelscoot mobility scooter. Walking was starting to be a challenge. Since then, my disabilities have increased and now my life is full of challenges. Just to get out of bed and dressed takes me about 45 minutes. I won’t bore you with anymore problems.
Consequences of MS
It is now more difficult to find the oomph to write these blogs. The energy required exceeds what is available and it gets worse year on year plus everything takes longer. Therefore I’m cutting myself a bit of slack. I will still manage to write a few but they will be shorter. Some will aimed more at Amazon products that I promote and receive a tiny commission when they are sold any through my website.
I will be using Instagram much more, my two pages are @pb.aid4disabled and @patrickburke.54 and you are welcome to follow me.
Resilience
Recently life has thrown numerous problems at me and this summer has been particularly difficult. Living through unexpected obstacles is harder as we get older and calls for colossal resilience. We have had to adapt to a new life in Kent and accept that we are older and not as strong as we once were. I do wish that MS did not impose so many restrictions on me and every year something new pops up to make everything even more awkward. Life is finally beginning to settle down and I hope there are no more dark clouds.
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