Looking after Covid-19 survivors? Talk to oncologists

Image result for nhs humourSome Cancer survivors may have a wry smile these days.
Reports in the media suggest that those recovering from Covid-19 are experiencing the problems we had to face.
Often we know what is required to handle long-term side effects from drugs, but no-one seems to want to know what we know;  a case of the NHS left hand not knowing what’s happening to the right – or an old-fashioned case of ‘dog-in-the-mangerism’. 
Mind you, I feel sorry for Covid-19 patients;  they are learning that so often we have difficulties getting someone to take our symptoms seriously.  We are ‘only patients’, and aren’t expected to have a brain. 
What can help post-Covid-19 survivors
So what do we know that might help those experiencing ‘long-covid’?
One of my favourite doctors told me it often isn’t expensive treatment that help, but medical staff who look at us as a whole person and FIX what is actually wrong. When I decided to do something about pain, as it was stupid to suffer, it turned out often to be the simplest and cheapest remedies that helped me cope best. 
Warning!  I am not medically qualified, but do believe in consulting the best doctors. I don’t believe in ‘miracle foods’, alternative medicine, etc.  I go by clinical trials and what is used in major hospitals, both here and abroad.  
Pain
This is such a complex subject, and what works for one might not work for others.  But if you suffer pain, make sure you have been referred to a pain consultant for help and advice. Here is my guide to what worked for me.

I am definitely NOT going to preach and say you MUST try this – but these treatments were prescribed for me by some of the top pain consultants in London; and worked for me.  If they make sense for you consult your doctors/nurses.

Pain killer tablets  – There are those that work for me, and those that don’t.  Once I find one that works for me,  I just have to insist I get XXX drug next time I break something, get joint pain, etc.  There are differences, and often when I insist something isn’t working for me, the doctor will admit that it probably won’t, because …..   So why waste time and give me more pain if something doesn’t work?  Probably because it’s cheaper/easier to prescribe, e.g. paracetamol.

So STOP experimenting on me!  I now insist on having what I know has worked before, unless there is a valid medical reason why I shouldn’t have it.

It was a sensible doctor who lectured me when I ended up under his care having fractured six bones (I don’t do things by halves!).  He stood over me and explained that he didn’t want any heroics;  I MUST take the pain-killers at the times he prescribed – every four hours – even if I wasn’t experiencing pain at that time.

So I did – whether I felt I needed them or not.  And I was OFF pain-killers in double-quick time .  It’s when nurses are rushed off their feet and ‘forget’ to give you pain-killers at the right time that you don’t get the benefits, and often end up having to be on drugs a lot longer.

Cramp With polio, I was used to thinking about possible reasons for attacks, particularly cramp.  Eventually, after trying a multitude of tablets, I found that Quinine BIsulphate  worked for me (not Quinine Sulphate – it’s the BI that makes the difference for me).  There is NO guarantee they will work for you, so discuss them with your medical staff.

These tablets work for me – but may not work for everyone, and you have to have them on prescription (don’t buy them off internet sites as you don’t know what you are getting).

Electric under-blanket:  at the end of the day my joints are often throbbing, so I find lying in bed on a warm under-blanket incredibly soothing. Heat in all forms is helpful, especially the warm waters of a hydrotherapy pool.  So that works as well.  And sometimes lying in a warm bath works – friends swear by their Hot Tub, but that may be too expensive.

My electric blanket turns itself off automatically, so there is no danger of over-heating.  Incidentally, this is something families love giving as a present, if you have a special event coming up……!

An electric blanket has the double benefit of also heating the bed in winter; I find my joints don’t give me as much trouble in the summer, but heat, in any form, really seems to help. So if you end up at the end of the day with aching, throbbing joints, do try an electric blanket before resorting to pain killers!

I did try some machines, but frankly these didn’t work on me, neither did Acupuncture – but they have proved beneficial to some, so worth a try.

Also, lidnocain patches were superb at soothing bruises, but didn’t give my joints pain relief – but again many friends reported good things.  Each to his own.  I’ve since learned that lidnocaine can be counter-productive if you have had polio.  If you have, tell your doctor as apparently there are alternatives.

So Good luck! But don’t think nothing can help, because there are a lot of pills and potions out there;  It’s just a case of finding the right system. 

 

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