We continue to live in strange times. I hope you like the vlog aspect to my general blogging.
I told the story of the scorpion stinging it’s rescuer because I think life is “stinging” a lot of people just now. We are all struggling with different aspects of #lockdown and #socialisolation.
My sisters and daughter are used to being very active and it’s hard to suddenly be stuck at home. Of course on top of their own worries, they worry about me and keeping me safe. It’s hard for me to be reassuring when the news is constantly reminding us how this disease affects those with pre existing conditions worse as well as those from the BAME community and our fabulous key workers.
On top of all of this we still have people living with cancer and the consequences of treatment. Many of us have elective appointments for related aspects of our health but they’ve all been put on the back burner so that the NHS can, quite rightly, concentrate on the pandemic. Sadly though the problems that created these elective appointments and procedures still exists. None of us know when things will get moving again. It’s hard for the medics and it’s hard for us being in a void.
Those of you that read my stuff regularly will know that I had to have the line removed from my chest due to a blood clot. Despite 2 months of daily injections, I still have swelling around the area. I need to take these stinging injections for 3 months and then review.
I don’t know if it’s the damage caused by the various lines or just to do with the heart but I now have lots of symptoms that indicate all is not well. Your SATS (Oxygen in the blood) should always be 96 or above. Mine goes down to 90 when I try to climb the stairs. I also get lots of swelling in my legs. All this supports the respiratory doctor’s hypothesis that I have mild pulmonary hypotension.
I’ve managed a week of retaking the chemo drug at a lower dose. I’m pleased it’s worked so far. I feel exhausted all the time and could fall asleep at the drop of a hat. I also feel more nauseous and have pains in my stomach.
Weirdly I’m also struggling with reflux. I have to sleep propped up at night to prevent stomach acids ending up in the back of my throat or mouth.
My mouth is incredibly dry and sometimes I feel like the food is getting stuck as it goes down. I have to chew and chew and chew because of not having enough saliva to break it down.
My eyes are also very dry despite all the gels, ointments and drops. By the end of the day when all I want to do is flop in bed and watch crap TV my eyes can become really blurry. They burn like when you are coming down with a cold and feel scratchy like I remember the feeling from when I got conjunctivitis as a kid.
The other weird thing about my vision is that I seem to be seeing wavy lines whereas I know in reality they are straight. The keyboard being a good example. I presume this is a side effect of one of the tablets. Does anyone else have this symptom?
On a good note, for the first time in a couple of years, I’m not having to run to the loo so frequently. It was anything between 5-20 times a day. Now it’s up to 4 max. So much better.
My PEG site is quite bloody most mornings and hurts when I first get up. I have to clean it several times a day and change my PJs and sheets more regularly than I would like to.
My muscles and joints are awful just now. I often sit staring out of the window as I try to breathe over the pains n my hips and shoulders. My ankles and knees are very stiff and tight too.
My skin is driving me to distraction. I’m itchy all the time. I can often be seen scratching my scalp or rubbing my back against the back of the sofa. I’ve never had dandruff but have it all over my body now as well as in my scalp. Can any one give me a tip for moisturising you’re scalp?
Final change that I’ve noticed is that my nails are awful and full of ridges both vertically and horizontally. They are also very brittle
I write all these things down to encourage others in their journey’s. Also to demystify what goes on for patients with serious health conditions. I also attach it to the scorpion story. Many of us get stung by life. For those with medical challenges we all have procedures that we’d rather not have done. For example cameras put where the sun don’t shine or bone marrow biopsies. It’s down to us how we react to all of that. Will we let the stings take control or will we keep our temperament which is to give and receive love.
I want to live in a world with more love and less stings. If the stings don’t lessen up, I will need to increase the flow of love and laughter. I know there is an unending supply. We just need to keep topping our supplies up and sharing it around. Make sure you hand some love away. It might not mean much to you but it could mean the world to the person who receives it.
Wishing you all love and light and safe virtual hugs.
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