We all continue to live through very strange times. It’s still scary for me to see so many folk returning to “normal” like with the huge crowds at premiership football games. I know we have to do this but I am concerned about the impact on infection levels. I suspect we will have another spike once the kids go back to school too.
Where does all this leave me and people like me? I was reading a lovely friends Facebook update. She’s not having a straightforward time of it since her transplant. She gets her friends and family to do lateral flow tests and like me she entertains only out in the garden. This is fine when the weather is good but won’t be so easy come the autumn and winter. Sometimes it just all seems relentless. The ongoing uncertainty for those of us with weakened immune systems combined with the uncertainty about our health and related matters means that life can be very challenging. The recent talk about the vaccine efficacy declining is also concerning.
I’m lucky in that I don’t look on the dark side of life. I’m pretty upbeat most of the time and feel very fortunate to have been blessed with this temperament. Recently I had an MRI of my spine. Weird to have it on a Saturday but shows how the NHS is playing catch up just now in so many disciplines. Waiting lists for elective procedures are the worst they’ve been for decades. Despite these extra pressures the NHS keeps going. I’ve been booked in for my PEGJ removal procedure again next week. This will be the 4th time, as many of you will be aware, that I’ve had to start prep for this minor surgery. I’m already feeling the impact of stopping my stomach acid reduction medication and I’ve only been off it one day! Last night I woke up choking and coughing and spluttering. It was horrible and was quite a violent way to wake up. I thought I was going to be sick. Luckily that didn’t happen but it seemed to take ages to settle. I had to prop myself up in the end. That helped and I eventually managed to get back to sleep. I’m really struggling with indigestion and heartburn. It makes me feel pretty rubbish. I’ve also got gut ache. It’s a shame because I’m away for my cousins wedding. It’s the first time we’ve been away in 2 years. My cousin has a separate granny annex which makes the visit possible. Sadly I can’t join in as much as I’d like due to feeling a bit pants and the need to continue to shield. At least I can be here though and that’s been a great boost.
In reality, when I think about it, I’ve been feeling a bit off colour for a couple of months. When I say something like this I mean I feel worse than I usually do. I can’t remember what it feels like to feel well and normal any more. What is normal any way? What’s normal for a spider is chaos for the fly! How it’s manifesting itself just now is that I often feel slightly headachey. I also feel as weak as a kitten. I struggle to walk any distance, and stairs are a real problem. I have to stop after every few steps because my legs don’t want to carry me. I also get out of breath and can’t walk and talk at the same time. I’ve been experiencing a bit more nausea lately too.
On top of these challenging symptoms I also find myself wondering if something is going on neurologically? I have always slept very soundly. I also sleep in a very still and quiet way, hardly moving at all. These days it’s a very different story. I moan and make noises all night. I feel dog tired all the time in the day and it’s almost like being sleep incontinent as I want to, and could, fall asleep at the drop of a hat. I continue to experience numbness and tingling in my hands and aches and pains in my muscles and joints. The other weird thing is when I’m walking I sometimes feel like I’m veering to the left. Strange eh? I’ve become very clumsy too which is not good when you’re taking blood thinners. My arms and legs are covered in bruises. They make some very interesting patterns. It gives me something to look at when I’m bored. Lol. The final thing that’s becoming more of a problem is my hoarse voice. It’s been happening on and off for about a year but the last few months has become more pronounced. I find it very difficult to project my voice or sing. There’s so many possible causes for this but at the top of the list I’d put either reflux or peripheral neuropathy. Time will tell.
I suppose I feel like there is a global weakness throughout all my systems now and I am full of doubt that things will ever improve. That’s a hard place to be. I’ve never shied away from the hard places or the tough stuff and I know all this will calm down and I won’t always feel
it so acutely. My old GP who I got on so well with was brilliant. He was my local doctor for 20 years and I still miss him. He was always very down to earth with me because he knew me well and knew that I didn’t want anything hidden from me. I remember him saying to me “you’re not destined to make old bones”
That’s a bit how I feel just now. I am constantly standing on ground that shifts beneath my feet. I’m trying to hang on but I’m made of less and less substance and I’m getting exhausted. I want Covid and the restrictions to end. I’d like to be able to get out of a chair without help if it’s a bit low. I’d like not to have so much pain. I can live in hope!
I’m happy to put this all on the outside of me because it does less harm there. We all need to vent at times so please don’t read this as me giving up because I’m definitely not. I just need to say I’m at that point in this marathon dalliance where I’m not sure I have much left in the tank.
This week has been good though and is just the tonic I needed to offset my current challenges. As said I’m unusually away from home for a week. And as it’s the first time in over 2 years that I’ve been away it’s been quite exciting. My cousin finally was able to get married as the Covid restrictions have lessened. It was an utter joy to be there as a family member for Claire and welcome Sarah into the family too. It was bitter sweet as it was the first time I’d been able to visit since my lovely Aunt Dorothy and Uncle Richard died within 2 weeks of each other at the beginning of the pandemic. During this time so much has changed for people. As much as I moan about all my aches and pains, it sure beats the alternative! I am very grateful to my little sis Gail for donating the gift of life to me and for all my special family and friends who make it as safe as they can to enable me to participate as much as is possible safely.
The photos show how well I look, especially when scrubbed up! It also shows how looks are very deceptive. I may look well but I don’t remember being in this much pain for years. My back is giving me some considerable gyp. I’m hoping it’s not going to last much longer.
As mentioned On Wednesday I’m due to have my PEG J removed for the 4th time. I’m also have a polyps removed abs a chip inserted into my tummy that measures stomach acid. If it goes ahead it will be the first time in 5 years that I won’t have a pipe sticking out of my body. I can’t wait.
As this procedure has been slotted in, no one took much account of the fact that I’d be away for the week before. I’ve had phone calls from endoscopy all week. Here’s a summary of my first phone call for your amusement.
Hello can I speak to Mr Grant please
Hi it’s Kes speaking.
I need to speak to Kes Grant
Yes it’s Kes speaking.
Oh ok. Is he aware that he’s coming in for a procedure.
Yes she is.
Does he have any Covid symptoms.
My name is Kes Grant and I’m a woman.
Oh it says he
No it’s says Reverend but many of us are women - sigh!
The conversation then went from bad to worse. The nurse was insisting I get a PCR test on the Saturday. I explained I wouldn’t be back in London till Sunday. I was told I had to book a test but when I tried to, it was book on the day. The nurse told me they needed confirmation of a booked test. The test Centre told me that the hospital had to make the arrangement. I was going round in circles fast.
In desperation I spoke to my lovely haematology gang. Jamie got the short straw of picking the phone up to me and went out of her way to sort the problem. She was able to book me in for a test on Monday morning in ambulatory care. I also managed to get a test on Saturday in Nottingham. So with the belt and braces approach hopefully it will be good enough.
Then I was told the procedure had been delayed a day to enable a test result to come back and to make sure there was a bed for me after the bank holiday. So I’m only away for a week and it’s the first time in 2 years and I spread a considerable amount of that time on the phone or internet sorting out medical things. It can be so bloody annoying and frustrating not to be able to get away from health related issues.
Oh my days. What a palaver! Please would you all pray or send positive vibes that all goes ahead this time. I shall let you all know one way or another. In the meantime I hope you all stay safe and find some love and hugs in all you do.
