Updated: Jun 11
It’s been at months since I last posted. I wish I had good news but, unfortunately, despite mild/moderate cases in our family back in March, both my 15-year-old son, Aiden, and I have continued to be Covid long haulers.
Yes, a long Covid teen. He had a ‘mild case’ in early March with low grade fever, a slight cough, chest discomfort and muscle aches for about two weeks. Some fatigue and a series of skin issues followed this throughout the summer. But when school resumed (it is in person here in the UK), he was hit with colds/viruses or maybe relapses (cough, low-grade fevers, aches, fatigue) despite a negative Covid test. This happened about 4 times. In the middle of it, he had two weeks of exams (with the added stress of other students testing positive for Covid in other year groups). And this last relapse has not lifted. He also now has ‘covid toes’ and fingers – a few painful, purple toes and fingers that hurt with temperature change and sometimes walking. At the moment, he has missed 6.5 weeks of in person school as any physical exertion leads to a relapse.
It’s very painful for our family to watch my previously, healthy and very athletic son so ill, especially as this is a key academic year for him. Only last year he was a city-wide winner in several running competitions, and now he can’t go on a simple walk. It has created an ache in this mama’s heart.
I also have continued to have relapses with any stress as well. My worst one was about seven weeks ago. With a very high fever and horrid stomach issues (we won’t go into this one!), the paramedics said I could cook an egg on my head as they rushed me to the A & E (ER) in an ambulance. Fortunately, it was short-lived (it calmed, though I still had symptoms for about two weeks). I have continued to have more ‘minor’ relapses that resemble everything from a two-day cold to a week of flu-like symptoms if I do anything that is beyond my minimal baseline such as a bit too much housework or a walk for over 5 minutes. Both my son and I have developed an ongoing list of food intolerances as well and have muscle aches though mine are more severe. These types of relapses are called post exertional malaise in the ME/CFS world, though some of the symptoms are quite different with Covid. They are also very common in Mast Cell Activation Syndrome (MCAS)—basically an immune system that just won’t simmer down and can be exacerbated by any form of stress.
On the (sort of) bright side,
The forced bed rest has significantly calmed some of my heart inflammation issues, though I am cautioned to remain careful for at least another few months. After many cardiac and lung tests, I have no permanent damage and a strong inhaler has improved my breathing issues.
More research is in progress with those suffering from Long Covid who were healthy prior to the virus. There may be genetic components involved, along with an immune system in overdrive (MCAS and autoimmune) as well as a depletion in various nutrients as the virus attacks different systems. There have also been print studies released about Covid staying in the GI tract for months creating viral persistence which adds to the long-haul mystery. There are no easy answers and I am grateful that my son and I have not had some of the more serious complications long haulers are facing such as strokes, heart attacks, acute appendicitis, debilitating muscle pain and damage, and a list of other awful complications as long as your arm.
We have had incredible support from friends and family who are aware of our ongoing struggles as well as Aiden’s school staff and teachers who are trying to help him catch up with online classes and tutorials as he juggles this with fatigue.
I’m incredibly grateful we have not found ourselves in the position of many US Covid long haulers who have thousands of dollars of tests and hospital visits piling up (many have to choose or forgo tests as it has gone past their insurance limits or have lost their jobs and their insurance because of health as we are a part of a nationalised health system here in the UK. I’ve gotten ultrasounds, MRIs, pulmonary tests, X-rays, speech therapy, and my son is also being referred to specialists. I am also paying to go privately with an MCAS specialist who will work with my NHS doctors as it seems to be one piece of the puzzle. (Please, no political comments on ‘socialised medicine’ – this would have been drained of our finances over nine months in the US from this experience but we are grateful to live in the UK).
This has also been a bonding experience for our family but especially for Aiden and myself as we have all grieved the loss of health, activity, income (I can only work about 12 hours max on a good week), seeing friends, going for walks, and doing even simple things when we feel quite poorly. For my fellow long haulers in groups that I am in (including parents of long covid children), mental health has been very challenging, especially in the holiday season. Loss in so many respects, chronic illness challenges plus Covid actually causing low mood, anxiety and depression has taken its toll. Personally, I have a counsellor I’ve been seeing online since July that has made an incredible difference in this struggle with a mystery illness.
In my last doctor appointments (one with my normal GP and the other with pulmonary specialists), they both said that Long Covid is still a mystery but our city is about to get a Long Covid clinic where my son and I can continue to get multi-disciplinary care and well as potential rehab. And yes, we have pursued alternative medicine, supplements, etc (no advice please)—but every ‘body’ is different and so far there is no easy, quick answer.
And, despite the issues our government has here, I appreciate the lockdown efforts, the sobering messages, and the call to have extreme caution as we go into the holidays. Yes, it sucks. Yes, it is hard. But having Covid for many is much more difficult.
After 11 weeks of laryngitis after Covid and constant vocal issues in the following months, especially after exertion, I am beginning to round a corner with speech therapy. It is not fully recovered and I have more challenging days but I am hopeful my voice will regain its strength. Even last week I recorded a 20-minute corporate voice over and my voice remained ‘normal’ until the next day which was a vast improvement.
The vaccine has arrived here in the UK, and the vulnerable and some health workers have first dibs. It is hopeful though it will be a few months before anyone under 50 in the general public can receive it. And it’s also discouraged for those with continuous long haul symptoms like us..
As a family, despite months of ongoing challenges, we have hope and encouragement that this is merely a very long season. And this season will end, eventually. Aiden and I are on extremely strict diets, limited activity and need an abundance of rest, but we also have a perspective that there are many worse than ourselves and we have much to be grateful for in this ongoing bumpy ride.
One last note, personally I am in several research studies. One very interesting conversation involved a skype session with a British professor in Hong Kong regarding Covid and speech. As a side note, I asked how they were doing with the virus. She said that she was mortified when she watched English news as she saw so many without masks on in the background. In Hong Kong, a city of over 7 million, they have had strict government enforcements, social distancing and mandated mask wearing required everywhere outside the home since March. Mask-wearing apparently was a common practice for flu season prior to Covid among Hong Kong residents – so there was never any debate. To date, they have only had a little over 7,500 covid cases and 120 deaths. I believe the numbers speak for themselves. It is the difference between seeing this as freedom to protect my neighbour and my health, and ‘free-dumb’ to exert ‘my rights’.
Your thoughts and prayers are very much appreciated right now as we are in the holiday season, especially as we both hope to get extra rest before Aiden attempts slowly return to school person school in January. May this season also be one of rest for you as so many of us will not have the types of activities that normally fill our December. It is a loss, yet, this too shall pass and our family is choosing gratitude as we wait for our bodies to recover. May we all celebrate and have gratitude for the gift of health.