It is very easy to feel powerless waiting in the hopes that others such as doctors will help you but is there anything you can do yourself to help with Long Covid?
Well almost no two people have the same set of symptoms or issues but in my view there are quite a few things you can do yourself.
The most important is get informed and get assertive.
The more you know about the condition and treatments for symptoms the more you can argue, request and pressure medical people to give you the help they can access. You might have a GP who does not want to know about Long Covid and is not interested in helping. If you suggest they refer you to the Long Covid clinic they will have a hard time saying no. If you have breathing problems and a respiratory physiotherapist might help then put pressure on your GP for a referral.
Given the number of people who are given dismissive or inaccurate information from medical professionals it might be well worth requesting for a copy of your medical records so you have seen what tests have been done and what specialists might say about you. You can look at what tests have been carried out and what treatments are offered and compare them with good practice guidelines such as NICE or Dr Sheppard’s guide on ME/CFS and Long Covid. If you do not feel you can read or make sense of the information yourself then you can assert yourself and find a friend, family member or other person who can look at your situation for you. Or just bring the information to your GP and check that they have done everything in line with best practice.
If you have post exertional malaise/ symptom exacerbation
I honestly believe that it is really hard to learn how to manage ME/CFS type symptoms on your own. The advice of pacing and rest is crucial but it is much harder to do than it sounds. If there is a long wait to access the right help or the right help just is not easily available in your area then I do feel that there is a lot you can do on your own to help. I highly recommend the Action for ME Guide on Pacing and I recommend reading advice here on “New to ME/CFS” once it is published as that will give a good overview of steps you can take yourself to rest and pace better. There is also http://www.cfsselfhelp.org/ that has a lot of good information and they run quarterly courses in Pacing that might well be very useful. In our group we have many people experienced at pacing and rest so you can get lots of ideas, advice and support from us in this area.
You might also want to consider using a Heart rate Monitor to assist with Pacing. We have a leading expert on this topic do a presentation for us in May and hope to run a project in this area soon after.
If you have breathing problems
Many people with Long Covid have been found to have Breathing Pattern disorders. You can assess this provisionally yourself and take action. It is still well worth discussing this with your GP as much as you are able and you might well benefit from advice from them, from a respiratory physiotherapist or other assessments and referrals. If you have a bad breathing pattern such as quick breaths or not adequately using your diaphragm then you can look to do some self management programmes to assist with that. I am currently doing the Stasis Life programme as well as irregularly attending Operatic Breathing Sessions. Covid can cause a lot of lung and chest damage and that will probably need more than just breathing excersises but there are still many people with Long Covid for whom they could help.
Asthma and Lung UK have created lots of great resources on Breathlessness and other long covid related issues. They have videos and written information on techniques such as rectangular breathing that have helped me. They also have a nurse staffed help line that you can call. https://www.blf.org.uk/support-for-you/long-covid/breathlessness-support. There is also some good advice here https://www.physiotherapyforbpd.org.uk/wp-content/uploads/2017/06/Post-Covid-Syndrome-breathing-final.pdf. as well as here https://longcovid.physio/breathing-pattern-disorders
If you have problems sitting or standing up
Orthostatic intolerance is one of the more common issues people experience with Long Covid and it can trigger a wide variety of symptoms including fatigue, dizziness, and much more besides. If you have these problems then you should do what you can to get help from your GP and specialist referrals as appropriate but there are still a lot of things you might be able to do yourself. I bought a Blood Pressure reader and take regular readings to help gather evidence to assist with diagnosis or at least pressuring my GP. There is a lot of information on PoTS UK on advice like water intake etc.
Food Intolerance
Many people with Long Covid find that they have developed or experience greater severity of food intolerances. Tell tale signs can include feeling an exacerbation of symptoms such as fatigue, bowel discomfort, IBS or nausea during or after food. If you experience this then you should really discuss this with your GP or dietician but there is a good chance that you will not get the answers that you need. I have written elsewhere about Elimination and Trial Elimination Diets and these can be great tools in identifying what foods might be triggering problems for you.
Chemical Intolerance
Quite a few people are developing chemical intolerances as a result of Long Covid. If this you and you are able to identify some of the chemicals that are causing you problems then trying to limit exposure to them is likely to be helpful.
Accessing Peer Support
So often other people have been down similar roads to you and can give you different insights and perspectives. Sharing your knowledge and experience can also make you feel more empowered too. As well as our group there are other excellent Peer Support you can access.
Rest
There is a lot out there on the dangers of deconditioning and whilst deconditioning is real so is over-exertion. Your body has faced a horrific virus and needs time to adapt and recover. This is particularly true if you have any fatigue or post exertional malaise in which case effective rest is by far and away the best if not only effective treatment.
Ben