Today was one of those days. I experienced a real bittersweet moment. I’d had the engineer out to the washing machine. It was pulled out from under the work top. I thought I could easily slide in and hunch down and pull the plug. Instead as I hunched down my legs slowly gave way and I gracefully ended up on the floor like a snow figure melting. Me and my long suffering partner were in fits. She had to pull the washing machine out more so that I could shuffle on my bum out of the confined space as I didn’t have the power in my legs to stand up. It wasn’t dignified as I had to get over on all fours and then be hiked up by Maggie. We both kept laughing about it. She said to me “why on earth did you do it?” All I could say was that I forgot my body was so feeble and went to do something that normally a 56 year old should be able to do. That’s the bitter part. It’s very hard to be reminded of all the things you can’t do. Luckily for me, I feel the pain of the situation and let it wash over me (pardon the pun) and then I move on. It’s so important not to be trapped by the harsh realities.
I’m not really enjoying this cold weather. I don’t like it at the best of times but now it’s more significant because it means it’s hard to socialise as I can only see people outside. I do have a plan to try and tackle it but the practicalities are proving to be challenging. I have a side return on the house that’s just under 2 metres wide. Most rectangular gazebos are 2 metres, so just too wide for the gap. If I got a rectangular parasol that was 2 metres, that might work as I could put it above the boundary. I just need something that would create a temporary shelter where I could see family and friends. I will also purchase a heater once I can locate a solution to the shelter. Any of you handy type people out there are welcome to make suggestions around what may work.
We are fast approaching Christmas. I love Christmas, especially all the twinkly lights. It makes me smile as I drive around and see the festive decorations. This year the ads on tv have the additional dimension of it being great this year that we can all be together after all the restrictions from last year. I am really pleased for those of you who are able to meet up and have these special celebrations. For us blood cancer sufferers or those who’ve had stem cell transplants or are immunocompromised for any reason, life hasn’t changed. We are still shielding. It is just stretching on and on without a solution so far. I know scientists and medics will keep going until an answer can be found.
Alongside the heavy emotional and psychological impact of our times, I’m also struggling physically. My appetite is waning. I keep getting nose bleeds and I’m absolutely covered in bruises. I get breathless easily and feel light headed at times. I know where all this is pointing but I hope I’m wrong.
During my time of living with MDS and the consequences of treatment, I have met many amazing people. It seems no one has a straightforward diagnosis, treatment and recovery. We all work in different ways and heal in different ways. It’s so good to have an MDS family around you who identify with shared experiences and are willing to share and support and give of themselves. Evie is a teenager who bravely battles all this. Emma is a young woman who’s still not in remission despite 2 transplants. Fiona and I have known each other for over 20 years and she’s struggling to get her cells to make the right response to her transplant. The lovely Ted is also having a rough time following his transplant. While it can be difficult to experience what we go through, it’s vital that we still feel empathy and support others. It also shows that there is no one type fits all approach.
Alongside those of us struggling there are some great examples of what we are aiming at. Russell had 3 transplants and went on to run marathons. I love reading the accounts of our members who are thriving and back at work. It’s always important to keep perspective and balance and not only see the challenges.
Regular readers of my blog will remember that back in March I had a mini stroke. It was scary. I lost the power of speech for a while and had weakness and numbness in my arm. It didn’t last long fortunately but I have noticed some lasting effects. When I’m chatting I often can’t remember a specific word I want to use. I’m much more forgetful too and I don’t concentrate so well.
As I finish this blog, as well as giving thanks for all the people who accompany me through these trials and tribulations, I also want to thank and give a big shout out to all those working in the NHS. In the last month between myself and my partner we have both been vaccinated with our 3rd dose of covid vaccine. Im also due a 4dose as a booster. We’ve also both had our flu jabs and Maggie had a shingles vaccine too. She also had her bowel screening done and tomorrow we both have our breast screening mammograms. Oh and I mustn’t forget that I’ve also seen a professor in haematology, received IVIG, seen a consultant rheumatologist, had surgery to remove my PEG and a few polyps and assess my stomach acidity via the bravo clip. That’s an incredible amount of skill and care that we all have access to in this country. It makes me feel very lucky and really blessed. My heart always goes out to the people from abroad who’s stories I read who can’t afford the treatment they need. Please protect the NHS at all costs. It’s priceless what we are offered. Let’s not follow other systems that don’t do nearly as well as our system. I know it’s not perfect but when it comes to looking after you when you are seriously ill there’s no better.
