It’s been a while since I’ve written a blog. It’s a bit like I’ve lost my mojo. It’s unusual for me. If I’m feeling off, there’s always a cause and I’m usually aware of what it is. This time I can’t put my finger on it. It’s just like I’ve run out of steam and can’t be bothered. I don’t feel depressed or down though, it’s more a lack of stimulation which is creating low energy. For those of you who have worked in schools, it’s like those young people who are intelligent but really lack any aspirations. Maybe I need a kick up the bum! When dealing with these kids, I would try and captivate them and enthuse them about things so their horizons would be broadened until they found something that really inspired them.
I’ve been lucky in my life to have so many things that have inspired me and pushed me beyond what I thought was possible. Sometimes I feel like I’ve lived 3 lifetimes in 1. These days the biggest challenge is trying to work out which box set to view on the TV and what else can be added to the menu of relentless meals at home. I shall just have to go with it and keep hold of the philosophy that this too shall pass.
Physically things on one level remain stable but on another are hard going. The stable bit is my blood counts have been consistently good for a while. There’s always a few things that are not quite right but nothing concerning at all. The GvHD (graft verses host disease) can still be problematic. My hands are like sand paper despite constant moisturising. Since I’ve been taking the ruxolitanib the itching is not quite as severe, so that’s really good. My mouth and eyes continue to be very dry. My eyes are often blurry. I need an eye test to see how far the cataracts have developed. My mouth can be really sore. I have a very painful lesion on my tongue. It’s like an open sore and has been there for around 2 months. My new denture plate is better than the last one and stays in place more securely but I hate it. It heightens the dryness of my mouth and gives me a bit of a speech impediment. Eating with the plate in place is challenging and I really don’t like it. I’m sure it all adds to the nausea. I wish I could afford implants. The impact on my teeth is one of the hardest aspects of this illness and treatment.
My joints and muscles continue to complain. I have lots of pain ranging from a dull ache to burning pain and finally a really sharp take your breath away shooting pain. My muscles continue to be really weak too. I’m sure that weakness in my muscles contributes to my breathlessness. You need good enough muscles in your chest to support your breathing. It makes sense that if my hands, arms and legs have weakened muscles, my chest will be the same. It makes sense to me anyway.
One of the really strange things that I’ve noticed is that my finger nails have all changed shape. I always had a nice curve to my nails so if you were looking across them, you’d see semi-circles. Now they are all flat. They also peel and break as well as having dips and ridges. On top of this, and as a consequence of my dry hands, I get splits at the sides of my finger nails. These are incredible painful for a few days until they start healing. It’s amazing that your health can be so rubbish with fairly major things to worry about and yet it’s the sore tongue and split fingers that cause most pain. Weird eh?
Despite me losing my mojo, life continues to progress. This week I had my 2nd dose of the covid vaccine. I really hope the haematology team are able to assess if I have any immunity when I go for my next lot of treatment. I think that continuous shielding for over a year is probably the main cause of my lacking enthusiasm. To have to continue to live in that very cautious way is not a happy prospect. I need my freedom back as, I know, so many of you do too. Most people would be excited about having had both jabs but for me there is just this relentless curtailing of my normal activities.
At least it’s easier now that the weather is a bit better. Finally I can now see people out in the garden as it’s warm enough to sit and chat. I’ve had a lovely weekend with a trip to my sister Gail’s garden on Saturday and then a nice time in my daughter Annie’s garden with the kids and grandkids on Sunday. It was great to spend time with the grandkids. I miss them so much. The boys are rapidly turning into young men. All their voices have broken now and they are changing shape and having another growth spurt. My granddaughter is 10 going on 25. Lol. She is experimenting with her make up and is quite good at it. She’s only allowed to do this when she’s at home though. I do miss giving them hugs and kisses.
I had the privilege this week of taking my sisters mother-in-laws funeral. I’ve know Deirdre for over 20 years ever since my sister met her husband. She was a lovely woman and really interested in what was going on in the world. She was inclusive and kind and always put some money in a card for my grandchildren each Christmas. My lovely niece Jessica was her only grandchild. She had a wonderful relationship with her and they played for hours when Jessie was little and went there after school.
I’ve missed doing funerals, so doing this one was even more special. I found it really challenging when Jessie got upset doing her reading not to be able to give her a big hug. She did so well and managed to compose herself and finish the reading with my gentle hand on her back. Deirdre would have been really proud of her.
This week we have also had the spectacle of Prince Phillips funeral. I’ve listened to many people phoning radio shows and saying how awful it was to see the Queen sat alone. Many were angry and didn’t think it was right. It made me sad as this situation has been going on since the pandemic started. Many ordinary folk have gone through the same or even worse than the Queen. So many people have not been able to attend funerals due to restrictions on numbers. Many mourners have been left to sit alone and cry. It breaks my heart to see these things. I’m a naturally tactile person. It goes against the grain not to reach out to comfort someone who is weeping. I’m firmly of the belief that there will be many people greatly affected by grief issues. So many haven’t been able to say goodbye properly. I think there will be a need for lots of memorial services to provide a structure for people to be included in saying goodbye. I will happily provide that service for people because I know that grief is a complex process and honouring peoples loved ones is a vital part of healing and saying goodbye. I really hope I can get back to taking more inclusive funerals soon.
One thing that slightly concerns me is that I haven’t seen a specialist since I’ve had the TIA (mini stroke) I’m sure the pandemic is getting in the way of follow up. Also it doesn’t help to have been seen for that in a different hospital. When I had my last haematology appointment, the thorough and lovely consultant Victoria said she would speak to the neurologists at Kings. I haven’t heard anything yet but hopefully I will soon. It would be good to be given some reassurance.
Another casualty of the pandemic is that I still have my PEG (feeding tube) in situ. I really want it taken out. Endoscopy is one of the departments that has a huge backlog due to covid restrictions. Victoria and Katie the dietician have agreed it can be removed. Now it’s just a waiting game. It will be good to have another hole in my body closed and to get rid of what I refer to as my pipe!
I suppose when you look at all the things that have been chipped away from me over the last 4 years since the transplant, it’s no wonder my get up and go has got up and gone. I’ve not been to church, I can’t sing with my choir, I can’t hug and kiss my family and especially my grandkids, I can’t shop leisurely for myself, my partner can’t come with me to the various hospital appointments, I can’t travel abroad or go on holiday, I can’t work. The list is endless of how my disability has robbed me of so much way before the pandemic came and made it so much worse.
I do count my blessings still and know that it’s not all doom and gloom. Since the transplant I’ve also met and bonded with 2 new sisters and a brother and their families. I’ve met many amazing people virtually around the world through our MDS forums. I’ve been blown away by the kindness of strangers in their responses to my audio diary on BBC Radio Kent. Also friends have warmed the cockles of my heart in their generosity of making contact and sending bits and pieces. I love working with the MDS UK committee. I’ve done some really interesting work with some Pharma companies and met some lovely and committed people. I’ve also been part of research and reviews into new ways of working. I’ve met neighbours who have made me lovely cakes and checked if I need things in shops etc. I’ve met some wonderful patient advocates and charities doing fantastic work. I say this to show I’m aware of all the goodness around me and how much love surrounds me. Sadly sometimes it’s not enough to give you that spark. Let’s hope it’s not too long before that spark returns and I become creative again and look for more ways to get up to mischief.
