Time Changes Everything – Long Covid Update

When I look at how much my life has changed these past few years it can be easy to get a little bit low, frustrated and even angry but my life has changed also in some positive ways also so I am trying hard to focus on those aspects and most days it does work.

I have like many others suffered with mental health issues over my adult life, I have struggled with anxiety and depression on many occasions and although these things never really go away I have learned that I know far better these days how to cope.

In the last 2.5 years I have had serious physical health issues from Long COVID after getting my first Covid infection prior to vaccination in October 2020. I was the first person I knew to get Covid in my area and it was frightening, I was very unwell and as a single parent I was for the vast majority of it alone. It damaged my physical and mental health in many ways. Since that time I have been slowly and steadily getting more and more symptomatic of long Covid and previously when I’ve hit these kind of bumps in the road my mental health has been massively impacted, right now it’s not always easy but these days I do have a handle on it.

I credit that to being in a healthy, loving relationship as well as having the most incredible children who give me a reason to smile each and every day. I am stronger because of them. I am stronger for them. I have a great supportive network of the very best family and friends and I don’t know where I would be without all of that.

Long COVID is a debilitating illness. I went from being probably the healthiest I had been in my adult life, going to the gym several times a week and walking between 15-25000 steps every single day to now some days struggling with getting about the house. I can’t do any type of serious fitness activity right now and for a long time keeping fit and walking was my coping mechanism for when I was anxious. I don’t have that any more and I miss it. I miss my body feeling strong and healthy, I miss being able to do a long walk or chasing my kids around the garden. I am in pain more or less all day, every day. Pain levels vary but are steadily getting worse, my mobility can be compromised. My legs are weak, my skin feels so sensitive that even loose clothes can hurt. I can only compare this feeling to as if I have sunburn all over and the pain in my legs feels like toothache in the bones. Some days, more frequently now my legs give way or go numb and this is beyond frightening. I am not yet 40 but my body feels it has aged so much. I worry my partner will get frustrated with this and that it has affected his life too much, yet deep down I know he loves me and supports me in this. Love is constant and not in good times only. I hide the majority of my pain from my children, yet they still see a grimace here and there or notice when I stumble on days when my legs are weak. They worry me about me I know this, I hate this. I reassure them often but my youngest will often say when will your Long COVID be over mam? And the answer unfortunately is I don’t know. But soon I say, hopefully soon.

Doctors are frustrated too, they can’t help the way they want to. I am intolerant to every pain med which would help, nerve pain tablets, strong pain relievers and even most of the SSRI tablets which can also help in these cases. I can’t even take anti inflammatory meds. I manage my pain (poorly) with capsaicin cream ( a type of chilli based nerve pain reliever) paracetamol, long , hot baths and more or less constant heat or massage pads on when I am rest. I am on several waiting lists, neurology and pain clinics amongst them. I was too unwell to complete long COVID rehab clinic and was advised to stop by the medical team. The pain management clinic, the thing I need most right now I was informed last week that I have 1 year remaining on the waiting list. A year, a whole twelve months with no resolution to this pain, it almost seems too much to handle. I knew this news would possibly make me spiral a little into a low place so I decided to write about it, I know that writing is also for me a form of therapy and I know it may help others too. Yet even what used to flow easily for me, the content, the words they are hard to find as a lovely little side effect of long COVID is brain fog, poor concentration and severe fatigue. For someone who has been a bookworm all her life and therefore always had a multitude of words sometimes they literally just disappear or they make no sense. It is scary. Yet I am still determined not to let this illness become who I am. It is a part of me, that I cannot change, it is now classed as a disability as I have had this for over 2 years yet I cannot give into it entirely. I still have to fight even if the only way to do that right now is mentally.

Long Covid Long Haulers are people who had ongoing symptoms for 12 weeks or more but it was expected to last only for up to six months. Many long haulers are now in their third year of symptoms with no end in sight.

If you know someone who has been affected by long COVID, please take the time to research it, it is in many ways an invisible illness yet it is destroying lives and people like me, very normal previously healthy people ( more often than not women between 30-50) are having such massive changes to their lives because of it. Be there for them. Show support. Try to understand it. I have a support network, many do not and the stories I see on the LC support groups are horrifying. COVID killed many and LC is continuing to change lives. If you know someone who has it and could benefit from reading this, please share. But above all please try to help understand this illness because many do not even some people who I know and love have belittled it unintentionally and that is very hard to take. It is very real.