The Long Lasting Effects of COVID-19

Long COVID: Our Experience (Months 2 – 6)

Written September 2020

It seems like a long-time ago, since I last posted about both Joe and my experience with Coronavirus. The reason for our previous post was to share our experience, with how it had affected both of us, but more importantly Joe and the serious nature of all the symptoms he faced even though he was not considered ‘old’ nor was a person with any ‘underlying medical conditions’. In fact, Joe was quite the opposite, he was a healthy 37 year old, with no existing medical conditions, whom worked out regularly between 3-4 times a week, a non-smoker, would drink alcohol a couple of times a week and was very much an active person. The exact opposite of the person, that the Government and media were describing as the persons who would be most effected by the virus.

Now, if you have read my previous post (if not, please feel free to click here to read before continuing) you may remember, that even though the account of what we had been experiencing was indeed devastating, towards the end of the post, you may remember, that it was signed off with optimism and encouragement for others, that if they too are experiencing the same symptoms as Joe, that there was indeed light at the end of the tunnel, and that Joe’s overall experience was improving. So much so, that we thought we were at the back end of the effects of the virus… Unfortunately, we found out we couldn’t have been further away from the truth and we were still in for one hell of a roller coaster ride…

 

Month Two

The first 3 weeks of the virus had been the scariest of experiences we had faced as a couple. However, as Joe was no longer bed-bound and was starting to become a little more mobile, we were hopeful that the worst of the virus was over and that we would start to see a quick recovery, based on our experiences with the usual winter viruses. Throughout Month Two, Joe would still experience a variety of symptoms albeit a lot less than the previous month (listed below). The symptoms would often be combined together and be experienced in intense waves, that would last for 1-3 hours, with a little bit of a break in-between before the next wave of symptoms would be experienced.

Symptoms aside, we were still keen to get Joe moving and started to introduce exercise in the second week of the month, in the form of walks ranging upwards in distances to 1.5km. Throughout the course of the month Joe was averaging a daily step count of 6,000 steps a day. However, the days in the month were mixed with days where his step count was high, but then he would be exhausted and would not be able to do anything for several days after.

As a general whole, Joe felt better than he had the previous months, because he was not tied down to his bed all day everyday. However, he still felt still very unwell, constantly feeling exhausted and forever feeling intense waves of symptoms. The length of time for how long the symptoms would go on for, was gradually decreasing as the month went on, however, Joe’s level of exhaustion was not decreasing.

Month Two Symptoms

• • Shortness of breath
  • Chest and back inflammation
  • Headaches
  • Fatigue

 

Month Three

At the start of the month, we began to realise that even though we were happy that Joe was able to walk a short distance every few days, we were beginning to realise that the days that would follow the walks, Joe would be overcome with exhaustion and spend the majority of the days following resting to overcome the fatigue. After seeing this pattern over the course of a few weeks, we decided to stop the walking, to see if he felt less fatigued. We decided instead of the walking activity, to introduce a little bit of work instead, so that he would feel mentally stimulated – something which he had been missing for the past couple of months.

After week two of the month, Joe started off working one hour a day and then increased the number of hours working a day, until he was working for the half of day. Joe found that he would still feel tired but not as overwhelmed from exhaustion as he was when he was walking and he was happy to be doing something productive with his day.

Joe still experienced the same symptoms as the previous month. The shortness of breath was not as often and was starting to ease up. There were also further new symptoms, such as: headaches, body tremors and tinnitus, which started to appear towards the end of the month.

Overall, Joe felt better than the previous months, as he didn’t feel as overcome with exhaustion, the waves of symptoms he would experience had started to become less frequent and were no longer taking up the majority of the day. Even though, the symptoms he was experiencing were still not great and sometimes make him feel quite down, it did feel overall as if we were making some headway, with Joe having some sort of functioning life back, even if that did not include exercise.

 

Doctor Consultations/Tests

Finally, after several months, we were starting to get some engagement with Joe’s GP Doctor. Previously, they were just telling Joe to rest and saying that in time he would get better, offering no medication or tests to look into the symptoms further. However, finally in month three after listening to Joe’s experience over three different consultations, they provided Joe with blood tests and a chest x-ray. Both blood tests came back clear and thankfully so did the chest x-ray. Even though it was great feeling for the tests come back clear, it was also frustrating, as it meant there was no medication or a different prognosis that they could provide, in order to find a treatment to help speed up Joe’s recovery.

 

Alternative Remedies

As this was the third month of Joe’s experience, we had been looking into different ways that we could help his recovery, which meant that we had started to create a collection of supplements and vitamins, that even Holland and Barrett, would be quite proud of! In addition, we engaged a nutritionist to ensure that Joe’s diet was maximised for recovery and introduced meditation, so that when Joe was experiencing waves of bad symptoms, he could hopefully focus on something else that would provide him relief.

 

Month Four

Following on from the previous month, Joe had been gradually increasing the amount of hours he was working to 3/4 a day and working a few full days a week. Sadly, Joe’s improvements were very much short-lived as after week 2 of Month Four, Joe had a major relapse and became severely bed bound again for the remainder of the month.

This time, his symptom list was as long as they had been for Month One (list below), with the addition of completely new symptoms that he hadn’t experienced before. He remained bed-bound for the rest of the month and felt extremely low both mentally and physically. In the middle of the month, he would experience strong waves of symptoms for the majority of his day. Towards the end of the month, the symptoms would still persist, however he would get 1-2 hours of respite before the waves of symptoms would return again.

Month Four Symptoms

• • Nausea
  • Diarrhoea
  • Sun burnt feeling skin
  • Body Tremors
  • Pins and needles
  • Random stabbing pain all over body (hands, feet, torso)
  • Chest and back inflammation
  • Sensation of fast heart beating
  • Chronic Fatigue
  • Tinnitus

 

Doctor Consultations/Tests

Following on from the all clear, from the blood tests and chest x-ray of the previous month and the rapid decline of Joe’s health again. We decided to engage private doctors to look into Joe’s health further. We engaged a neurologist to examine Joe, due to many of his symptoms seeming to be neurological in nature. In addition many other people on the ‘Long Covid Forum’ were also experiencing similar neurological symptoms, so we thought it was important to get Joe checked out. Unfortunately, similar to our research the Doctor also thought a lot of Joe’s symptoms, were mirroring those of an MS patient. Sadly, the neurologist had encountered other patients who had contracted MS whilst experiencing COVID and he referred Joe to get an MRI scan on both his spinal cord and brain to see if Joe had in turn developed MS through COVID.

 

Alternative Remedies

As like Month Three, Joe continued to meditate throughout his day, which often helped him get through his day whilst experiencing his symptoms. At the end of the month, we also visited a Spiritual Healer, to see if this could help Joe’s progress and truthfully, this seemed to help, we cannot explain why, but we did see an improvement after he visited the healer.

 

Month Five

Since Joe contracted Coronavirus, Month Four was definitely by far the second from worst month, after all that we encountered in the first month. In Month Five Joe gradually started to get better, week on week, however, the improvements were literally so SMALL, so if you did not analyse Joe’s experiences gradually you would miss his improvements and in fact would probably conclude that he had not improved at all. It is because the improvements were so small, it was hard for Joe to feel mentally good and positive and I really had to describe why I thought he was improving as I had a more objective view, rather than himself who was in the midst of all the symptoms.

In Month Five, Joe still experienced the same symptoms he experience in the previous month, however, he no longer experienced any (if so rarely) nausea, diarrhoea or the tingling skin feeling. Although some of his symptoms had subsided, he still felt overwhelmed with fatigue, describing it as a “feeling as if you are drowning in fatigue”.

Joe was still unable to work or walk any further than the steps required at home. However, towards the end of the month he was able to drive the car a couple of times, which was a marked improvement.

Also, at the start of the month, I took Joe away for one night to change the scenery and mark the date that we were supposed to be getting married. Although, he spent the majority of the time laying in bed, the change of scenery, honestly worked wonders. After returning from our one night away, he seemed happier and even suggested that we go away for a longer period so he could focus solely on his recovery, together and look out onto the sea, rather than the same four walls of home which had begun to feel like a ‘hospital’ for him.

Overall, the month was an improvement, although he spent the majority of his time sitting still because of feeling chronically fatigued. The largest difference from the previous month was that he was starting to experience larger gaps of time where his only symptom was fatigue and nothing else, which felt like a luxury to him.

 

Doctor Consultations/Tests

Following the advice of the neurologist from the previous month, Joe had two MRI scans, one on his brain and the other on his spinal cord. At the end of the month we received the results and were over the moon that he was MS clear. The neurologist was able to inform us that Joe did not have MS and in fact his spinal cord was remarkably healthy and concluded that he should make a 90% recovery by the end of the year. This was similar to the final conclusion of the Endocrinologist that we saw, who also found that Joe was suffering from ‘Post Viral Fatigue’ and his experiences, however, scary and slow, were indeed to be expected. Both Doctor’s advised us to continue as we were and to incorporate the practice of ‘pacing’ slowly adding in exercise and work into the routine, once Joe is able to go the whole week doing nothing and not feeling fatigued.

 

Alternative Remedies

In addition, to the above, Joe also started reading various breathing techniques which could aid recovery and started adopting Buteyko training and including it in his every day, alongside meditation and taking his supplements.

 

Month Six

The start of the month, we travelled to Ibiza and spent two weeks in a villa, looking out onto the sea, keeping a good diet, and with myself keeping Joe company 24-7. We travelled using a wheel chair, so that Joe did not need to walk for any long distances and it was our wisest move as he was not hit with the exhaustion from walking to the airport gates. Being away worked well for us, as it was good to do nothing and have no other distractions going on (for example, work) being able to focus purely on Joe’s recovery. The improvement to Joe’s health, week-on-week was more noticeable, and the period of exhaustion, happened for a maximum of 2 times a day for a couple of hours, rather than the majority of the day.

Joe’s symptoms list, for Month Six, mainly consisted of: fatigue, back inflammation and tinnitus. After arriving back from Ibiza and settling back in at home, Joe started working 1-2 hours a day and walking a distance of 150m a day.

Overall, Month Six was one of the best months for Joe, since contracting the virus. Even though he still felt tired a lot of the day, especially after working for an hour or going for walk, he felt more . mobile and ‘human’. We have our fingers crossed and are optimistic about the rest of the recovery, however, we know it wont be plain sailing and there is likely to be a few more set backs along the way. Currently, we are focused on the medical concept of ‘pacing’ and only increasing his activities gradually in order to minimise the amount of set backs, and really are hoping that this may the last leg of his recovery.

 

Our current outlook…

It has been a long journey, one which has been devastating, tiring, worrying and filled with a lot of helplessness. However, through it all we have remained strong and continue to research all that we can, looking beyond the help of the GP services, enlisting specialists as well as researching so many alternative remedies/recovery methods. It has definitely been a period of enlightenment along with perseverance and we continue to work forward to our end goal which is to get Joe back to 90% health by the end of the year.

We have been on a good track for the past month, however, like the black cloud that follows you during depression, we are always conscious of the unpredictability and unknown of the effects of the Coronavirus as well as the potential to relapse, should the method of ‘pacing’ not be adhered too. Therefore, we aim to not get complacent about Joe’s recovery and continue to push on forward with hope, optimism and positivity.

For those, who may be reading this who have or have started to undergo a similar experience to Joe, we implore you to not give up hope, to be comforted by Joe’s story and know that there is light at the end of the tunnel, even if that tunnel seems longer the Channel Tunnel itself. We encourage you to:

• Sign up to the Slack forum
• Discuss your experience with your loved ones and to not be afraid to rely on your loved ones for help.
• Talk to your loved ones about how you are feeling and where you are physically and mentally on this journey.
• Educate them by showing them other people’s experiences with ‘Long COVID’ so that they have more knowledge around it.
• Provide them sources or direction to information on the internet, in relation to chronic fatigue, so that they can understand your predicament further.
• Engage your local GP/private practice to get any of the tests that they recommend and pushing for further testing should you GP not be taking you seriously.

Lastly, take it slow, and find faith and trust in the process of ‘pacing’ and know that this will not be your ‘forever’ and you will be so much more learned and enlightened in the long run. Once you recover, you will see this as your second chance at life, but with a new profound respect for all that is important in your life..

 

Please share this post with anyone who you think will benefit from reading it and especially if you know of anyone who is going through the long stretch of the virus currently – especially those who may be battling this by themselves.

 

Further, please feel free to ask any questions about Joe’s experience below, as we would be more than happy to go into further details re his symptoms and the various tests he has undertaken etc. If it means it could be helpful for anyone else xxx