Today I heard the sad news that someone I know has died of the pneumonia which comes as a result of being infected by the corona virus. By the time this pandemic is over there will be many more of us who knows someone. We will all be affected by this.
I got my letter today telling me what I already know that I’m in the most vulnerable group and will have to stay in for 12 weeks. I’ve been isolated many times and probably will again. This gives an opportunity to be creative with the gift of time we’ve all been given. For all my MDS and transplant colleagues who have queries the letter, how I read it is that as long as my partner takes all the same precautions as me we DO NOT need to practice social isolation too. That only applies if the people you live with are going out. I’m fortunate in that my long suffering partner is happy to stay home and potter about so we can properly be alongside each other in this. We are lucky in that my sister and our daughter live close by and can shop for us and leave stuff on the doorstep. They then retreat to behind the fence and we have a nice natter.
One of the challenges to those of us that are in this most vulnerable group is constantly being reminded, on a daily basis, how vulnerable we all are. It’s like filling in a DLA/PIP application for disability benefits. They make you concentrate on all the things you can’t do. I’m always looking for opportunities and pushing to do as much as I can. This pandemic is shining a light not only on the Corona Virus but also how sick and vulnerable some of us are. That’s hard. I’m an old hand at it and it doesn’t bother me so much. I’ve faced my mortality and dealt with it several times over. Not everyone is comfortable doing that and so this is a struggle. I can’t do much while I’m locked in for 12 weeks but I can Skype and FaceTime or email. If anyone is feeling sad or anxious, do get in touch. We have two ears and only one mouth for a reason. It encourages us to listen twice as much as we speak. My body may be crap but my emotional and spiritual resources are deep and I am willing to share them with you.
I don’t know about you but these things never happen at a good time. When the lockdown was enforced we were partway through an insurance claim at home due to an extensive leak. The whole floor of the kitchen and dining room needs replacing. Half the tiles have been taken up and most of the kitchen is ripped out. That’s how it’s going to have to stay for the next 3 months as I can’t go out apart from to essential medical appointments and no one can come in apart from people providing essential care.
I am not the only one to have something unexpected going on in our lives on top of all the lockdown measures. My heart goes out to all the patients in hospitals who can’t have visitors. Also sadly to the people of those dying relatives who are not allowed in either. To all those who can’t attend funerals because either they are self isolating or shielding or are not on the very limited immediate family only list. Then there are those who need social contact because of mental health issues and can’t access treatment because of the current restrictions. Many are shut inside with no garden and a significant proportion of people don’t have social media or use the internet. The list of who will need to be held in the light is endless. These are all the challenges that we all share and face.
Alongside the challenges there are also many opportunities. I’m my last blog I challenged you to sort your drawers that haven’t seen the light of day for many years. My challenge to you this time is to sort your odd socks and see how many pairs you can find. Also alongside that job how about descaling the kettle. I accomplished this with a solution of equal parts of white vinegar and water. The kettle is now gleaming and my sock drawer is overflowing with the recently reunited additions.
As human beings we are designed to be sociable. It can be extremely hard to be socially isolated for some people. Let’s also use this time to look out for the most vulnerable in our communities and family. In my road we have started a whats app group. It’s fantastic to see that community spirit emerging and taking root. We’ve all had a tough time with Brexit and the nastiness that has been unleashed as a result. Now we have a chance to celebrate our differences and be united in our common humanity. With that in mind I urge you to phone someone who you haven’t spoken to in ages and give them a boost. Sometimes hearing someone’s voice makes a huge difference. Like the quote I like says “to the world you are just one person but to one person you might be the world”
Another nice thing you can do is watch a TV series you’ve always wanted to or a DVD or listen to podcast or radio drama. I’ve been watching the excellent BBC drama called World On Fire. It’s very hard hitting and covers all the aspects of the horror that was WW2. It’s 75 years since all that happened. The Blitz and the D-Day landings make COVID pale into insignificance. Back then everybody came together. That was the only other time I’m the last 75 years that churches were closed. We also had an overwhelmed medical resource (pre NHS). Many people volunteered and put themselves at risk in the same way that so many are today. Those of us that have grown up in peace time have not realised how easy we have had it compared to our parents and grandparents. They got through that horror and we can get through this. Just keep calm and carry on and stay in touch.
As for what’s happening with me. I seem to be doing alright on my new drug now. So far there has been no repeat of the projectile vomiting. I’ve had a bit of a bleed around and in my PEG so that could be the culprit too.
I have to go to the hospital on Monday for an essential blood test and to be seen in the breast clinic. That will Show what’s happening and if my kidneys are ok and can cope with taking a stronger dose of the new medicine.
My GvHD (Graft Verses Host Disease) is very active because of not being able to access ECP (extra corporeal photospheres ). I still have signs and symptoms of SVCO (superior vena cava obstruction) I get breathless and still have swelling around the area where my Hickman line was. This means I have to continue with those very stingy injections every night to keep my blood thin so it can get through the areas stenosis and also disperse any clots formed. The strength in my muscles continues to deteriorate. I am struggling to stand up off the loo if I go in a place where there is no handle or ledge that I can lean on. Trying to get me out the bath provides a lot of hilarity. I also can’t sit up from the lying position in bed. My lovely partner lends me her strength so I can do this.
Before the lockdown kicked off I was meant to be assessed by the OT’s (occupational therapists) The physio thought i needed the extra help.
Yesterday I spoke to the lovely Pip who tried to do an OT assessment over the phone. It’s not ideal but we muddled through. She is sending me a couple bits of equipment and will then do a video call with me to make sure I use them properly. There is always more than one way to skin a cat.
My final thought is around encouraging you and all those you know to implement the current rules and #stayathome and practice #socialdistancing at all times. How well all of you who are fit and well do dictates whether at the end of this you raise a glass to me at my wake or join me when we can celebrate it’s over. Your actions are important and may help save many lives. Please do what you can to stay in and stay safe. The exception to this is if you are out and about for essential work, helping the vulnerable, or DONATING BLOOD which is in short supply.
Thank you for all you are doing to keep me and people like me safe. We really appreciate it.
#highriskcovid #mdsbloodcancer
#lockdown
No comments:
Post a Comment