As you will know from previous posts I have been undergoing treatment with a chemotherapy tablet, this means that I have been sheilding. It has been 15 weeks now. I began ‘quarantining’ off my own back on the 10th March (official lockdown didn’t begin until the 23rd)
Unbeknown to me I had already been exposed in the first week of March.
My symptoms started with a sore throat that lasted 48 hours then there was a small gap before I began having shortness of breath and a high temperature. I didn’t think for one minute initially that it was Covid as I was not coughing nor did I have severe fever (mild-moderate but not severe). I did have the hot and cold symptoms due to the fever (ranging 37.5-37.7) I didn’t have any appetite as everything was like cardboard, tasteless. I also had a rash that I just at the time thought was prickly heat it only lasted a couple of days. I started needing more and more steroid and salbutamol inhalers and it kept on like that, the amount ever increasing but having little impact. I also had body aches, headache (which I’m not one for) and a sore, upset tummy. I was significantly lethargic. During the first week I learned that a person directly connected to my virus source had started with a persistent painful muscle pulling cough also. Shortly after another member of their immediate family had the same symptoms that lasted around 10 days in each case. This was a cross family spread between 4 households at least 16 people in total. We all caught it from the same source. After a week of the ever increasing breathlessness, temperature, upset tummy and signs of my daughter having a high temperature and lethargy I decided that I would phone the dedicated service.
I did not feel fear at the time, just laboured. I didn’t think I had Covid not really, not in my mind, I didn’t understand how (until I learned incubation time) It felt odd, it was an ‘odd’ experience, in that second week I just knew I needed medical attention.
The Covid Unit Visit
I was taken up into a Covid specific unit and seen. During check up the doctor confirmed that I was not getting any oxygen to the bottom chambers of the lungs (a thing specific to Covid that they now know but not at that time as it was early days). The Dr could hear I had a bad, dry, long wheeze despite the significant increase in inhaler usage and although I only coughed once in her presence she heard it was dry. The cough only started that day but wasn’t overly significant. My breathlessness, however, was clear but not enough for oxygen at that time nor a need for me to need admitted to hospital. Thankfully. I was told it wasn’t policy to test me unless I needed hospital treatment though at that moment in time (regardless being in the highest risk group). This I feel was a mistake of the system at that time. I was offered steroids and told they would protect my lungs at the very least and to see how I managed at home. If I got worse I was to call back. I did get worse but I did not call back as I was afraid of needing to be in hospital and leaving my daughter on her own with her own symptoms during a period of isolation and lockdown. I just kept telling myself it will be ok it will pass. I just stayed with it in the moment.
The steroids really helped for 4 days until the dose dropped and then finished. Day 5 and 6 of this treatment the symptoms returned but much stronger and I now had heavy and tight chest pain too, it was harder to breathe (not gasping though just much harder to draw oxygen) I called my GP, he gave me more steroids and a pill used off licence for Covid to help reduce any inflammation in my lungs. (here is an article about this specifically https://newyork.cbslocal.com/2020/04/22/coronavirus-covid-19-singulair-montelukast/). Eventually, after 3 and a half weeks, I awoke and could breathe again with no fever, it was gone. I still can get breathless if I talk too much or exert myself.
It seems that I passed it unknowingly in my incubation period, to others, I had no idea and that feels awful.
After feeling well again I learned how it all happened, who, where, what, when and how the jigsaw puzzle came together. I feel so incredibly grateful that all others in this line and myself are ok given the risks.
Post Viral Fatigue
Four and a half weeks in (one week post virus recovery) I developed a sudden onset of post viral fatigue. It steadily got worse and worse with time until I was needing to be in my wheelchair full time and had advice (very good advice) on how to help myself through this.
I have to say that my MS presentation is absolutely minuscule in comparison to what I have endured with the post viral fatigue. I have developed such compassion for those that experience this chronic fatigue or M.E. long term. This has been something else! I’ve never known or experienced such a thing. Utterly dreadful. After a long time embracing it and resting the strain eventually caught up with me, despite my best attempts. My mental health took a nose dive and there have been many many many days where it felt like I was in some sort of hell with feelings that I’d never recover and this was now life. Sheer physical exhaustion is an understatement, add sleep deprivation and lack of capacity to eat due to strong pain it has been often unbearable. Trying to function and relate with ongoing life has been almost impossible. It has been deeply distressing. The breathlessness still rearing it’s head sometimes along with lasting confusion and much reduced appetite.
I am finally starting to recover from it 13 weeks on (16 weeks if we include the virus from symptom onset) and never in my lifetime have I known such a thing. It may take some more time with small muscles but I’m able to walk again. Not being able to function or fend for oneself all of a sudden and having to be entirely reliant on another person to live is a shocking experience and regardless the resting there was little progress in all of that time. It was certainly a test to character, my usual resilient bubbly temperament has struggled immensely. It was such a deeply shocking and sudden transformation from being completely able to completely unable. Especially when life keeps carrying on and you want to carry on with it.
In my confused and exhausted state I began to have worry of it being another MS relapse as treatment would involve another extraordinarily high dose of steroids which I’m not keen on. Fortunately it didn’t impact. It all became very scary and I lost my inner stability, hospital was the last place I wanted to be given the pandemic especially given there is no idea as to whether there can be reinfection or not. So I succumbed to fear in that last month. I got lost inside. Stressed. I lost the capacity for clear thinking, acting or relating even basically as I usually would in normal circumstances. There were moments of fully witnessed tearful frustration. Bursts in spaces where I would never usually express my emotion in such a way. Muddy thinking, confused feeling and speaking. The confused state and exhaustion had become too much to function and relate. I struggled with everyone, everywhere. It was like the world was carrying on as if I was the normal person they have consistently known and many different people were expecting that I was functioning as they have always known me to be. I tried really hard but I got lost and eventually I had to stop with most of it as I tipped onto overwhelm. Communication went awry. Ironic given I needed to feel connected but it’s very hard when one is ill and exhausted and as I mentioned in an earlier post when we are under times of acute illness we (unless highly mastered) will find that we revert into old stress patterns. I was really not coping before healing finally began. I’m just thankful it was a brief time in this state and that I shifted out again as quickly as I went in when the exhaustion and confusion lifted.
Nasty after effect. In those few weeks inside I just felt the isolation, the anxiety of being a burden, the existential loneliness and that that brought up mirrors of times past and so much confusion mentally. All was arising and I had no control other than resting. I hadn’t the capacity nor resources to pull myself out of it to function with any real coherence for those few weeks. I felt a level of inner regression and I found myself questioning all thoughts and feelings (you know the non solid, non absolute transient passing moments of weather that I talked of in my last post. All empty in essence at the end of the day. Completely meaningless really). So many were speaking with me as if I was the usual lucid person they have known all of the time and I was trying so very hard to be that but honesty is I just wasn’t. I was exhausted, in pain, confused and strung out.
I had no idea how ill I had actually been until later interactions with medical professionals. Somehow I fought it and recovered well from the PVF.
Mostly I have had understanding from others for what I was enduring, particularly from those whom could read that something wasn’t right within me (from how I was speaking, the things I was saying), I was quite off in my communication and presence from ways in which they have known of me. My poor daughter has never known me in such a state. She found it upsetting and overwhelming to witness this. Hopefully she never will never need to see that again! I was lost, confused, exhausted, and without resilience and it was just enough to eventually tip me over spilling out inside. I had managed to keep so well mentally and emotionally for weeks, practicing resilience and trusting things will be okay. Keeping myself occupied with digital artwork, knitting, taking photos and being in the garden, meditation, visualisations etc but unfortunately in those final few weeks I just broke somehow, it got me. I managed to do one basic soul benefiting thing a day in the last couple of weeks and for that I’m deeply grateful, at least that was something and I’m sure it contributed hugely to me eventually finding the balance again. Outside of that it was deeply hard, I even tried using positive affirmations and outward messages of love and kindness in the later moments but it just wasn’t congruent. I wasn’t the person that I nor others felt a sense of familiarity with at all. I am deeply grateful though to those whom were able to hold the space, understand and see the difficulty for what it was, just illness and resulting confusion. For taking the time to ask and check in when noticing that something was rather off in my way and not taking it at face value as if factual. Also for the kindness that was then demonstrated in response. I was told it’s a kindness and presence that I’ve consistently offered others in their times of struggle, vulnerability or need and people just wanted to offer it back. Im touched and grateful. I don’t offer my presence expecting it back. I received some wonderful flowers too. Flowers (if one is not allergic) help lift spirits and give a sense of care and understanding in times of vulnerability, illness and heart recognising moments. Also a wonderful surprise gift of a Westie flower pot full with carnations left on my garden table! Delightful. This post viral state truly became beyond bearable in those last weeks and I was deeply lost and confused in my being with the acute pain and exhaustion. Forbearance is usually a strength of mine and this genuinely broke me. I have such deep gratitude for the noticing, patience and understanding shown though. For the room made in understanding this wasn’t the usual person they engaged with.
I had no idea how badly sick I was. I know now that eventually I would have benefited from some home oxygen but I did not call back. Part denial and part fear, feels silly now as that was a huge gamble. Apparently now though they will only see you if you are gasping or you lips are turning blue. Although my oxygen levels had dropped to 93 (not good) I didn’t feel how one would expect to feel at that, apparently this is a widely reported phenomenon now. I was not needing hospital admission, I trusted that. I did the right thing staying at home and although (what I now know to be symptoms at the more severe end) I was very, very ill I managed to fight it. I’m deeply grateful. Such empathy and sadness for those whom needed sedation and ventilation and to all of the families of those people whom never made it. A tragedy.
Mostly I was just getting on through it, keeping a stable mind but eventually around the end of May I just cracked. Confusion had been pervading and took over my being.
To all of the long haulers out there, you have my full understanding, empathy and support.
Finally now I am able to walk about no chair needed, it arrived as if over night out of nowhere and I am a hair off functioning fully again (being careful as there now needs to be strength and muscles rebuilt)
My Message To You
Please, please hear me and this experience as well as those of others. Keep yourself and others as safe as possible until they find a solution for this. The price is too high. You need to decide your own risk and it would be deeply kind and caring of you to think of the risk you may also pose towards others, this struggle and much worse is not something you need to endure or want to bring to another persons life. Take care out there.
I am sharing all of this for public learning and awareness. I ended up with this shocking post viral fatigue. So many are reporting the same and it is taking from 6-10 weeks if you were previously healthy to recover (sometimes longer depending on your body and how much you pay attention to it’s capacity)
I beg you, please, please take care out there in the new more eased phase of lockdown, be very mindful and do not underestimate the effect that this virus can have on some of you. Should any of you get it may it be brief, mild (as is in most cases, in and out) and may it not leave any longer lasting impact.
I don’t like to lay it on with such explicitness especially when it is a time filled with anxiety and there have been far far worse outcomes for so many souls but I need to share this story with you so that you can make wise choices.
Please pay attention and diligently follow the social distancing rules. Whether you have had the virus or not as there is still not clarity about immunity.
I had an appointment to have some bloods taken at the GP and I knew to take my mask. I wasn’t quite prepared though for the starkness of what awaited me. I was anticipating going in to an almost usual set up with some seats spread out was anxious of other people and how they might be. I’ve had the virus and hear there is a time of some immunity, even though I have no idea how long this lasts, so still there is a hesitation and anxiety. I have only just recovered from the awful post viral fatigue and don’t much wish to experience any of it again.
When I arrived at the doors of the surgery the sight I was met with was quite shocking. Warnings on stands tightly placed together only room for one body to move through “Do not enter if…” and then when I walked through the visual experience of the inside space was quite something else! Two layers of barricades around the reception desk. Big stop signs and all communal navigation areas marked ‘out of order’.
The waiting area itself was strikingly vast. Only 4 seats where there once sat around 50, all 4 marked out a little bit more than 2 meters apart. No need for a mask in the reception area but I had a mask knowing it would be necessary upon entering the healcare assistants room. Patients whom had arrived without a mask were immediately asked to put one on before they went in to see a doctor, nurse etc.
Just 4 seats, each robustly cleaned everytime a patient left. I have to commend the hygiene and safety measures, thank you for the care to all GP receptionists out there.
Stark and striking are the only words I can find to to best describe the experience. The new normal, nothing like life before. Odd and unforgettable, 4 patients, masked up and seated so far apart from each other in this vast space that used to bustle with energy.
How strange it must have been for all those whom were able to go out for essentials during lockdown to experience. The space requirements, the markings, warnings and a completely different way of functioning. Queuing up at the chemist outside like waiting at the ice cream van. Long, long queues. This moment at the GP surgery is my first awakening to this “new normal” as it is referred to. I can’t quite process it.
As I was sitting a few different people came in and moved on. Where there was no real relating previously (unless you knew someone) in the GP surgery now everyone felt a need to connect, to say something. An older lady in her 80’s said “strange, strange times, we’ve never known anything like it” whilst shaking her head and I wondered how long this strange new normal would last? Will we ever have that sense of old normality again? The world eventually recovered from Spanish flu and Smallpox but how long did it take? Years. Certainly it seems that with vaccines and time it was forgotten but will it be so again? Of course there have been other pandemics too like the first swine flu (another one potential just now) and also bird flu but not like this nor as highly infectious as this Covid beast.
Given I am in sheilding still (in Scotland until August, so far) this (other than my hospital appointment) is the only public space I have been in so far. I felt safe enough but I know out there in the world people aren’t respecting the distancing necessary. The advised distancing already reducing too (mistakenly unwise given the clear spike in cases across the world upon lifting restrictions). Such false sense of safety and security, for the sake of what seems to be money, sold to those whom don’t look further than local or national news.
Please social distance, please physical distance indoors. This virus is significant, maybe you will be ok but there is a few days to a fortnight where you don’t know you are infected and will be passing it on to others, others whom may be more vulnerable and at higher risk. You won’t know you have it during the incubation time but you will be infectious. Please bare this in mind. You don’t want to be the reason someone dies.
I will soon be downgraded from sheilding into the at risk group. Although I’ve without doubt had Covid I still have a sense of anxiety, it may be irrational it may not but it is a lot of adjustment and I’m only just getting the replenishment, healing and space I have needed for my health. I will be wise to keep what has been important during this time (out of the illness and fatigue) and shape the next life path from here. I am finding the slowed down pace and the more focused time on spiritual and relaxation practices more in keeping with heart. Nature too so going forward simple and as close to earth living in the moment it shall be. I feel healthiest right now for it and have such gratitude regardless difficult times. I have no plans to rush back into anything resembling my life prior to this virus and hope to keep this balanced pace in my being. Mind and heart are so much clearer for being well, that was a beast of a virus. I have no idea how I managed to function at all on any level, mentally or emotionally this past 4 months, I had a lot pulling my attention and made the mistake of just trying to behave and act normally when the truth was I was so far from any semblance of normal existence as one can get. It cost me, wont do it again. I’m grateful for the resting though and know I need some more as a general feature in life. Slow, steady and nature based. I did my best in a hard situation, didn’t always express myself very well or convey what I meant and in the end it doesn’t matter I got lost in my pain and exhaustion, never mind, we live and learn and life goes on. I’m thankful to all that has helped build resilience in this life even if it came from dark places. I don’t wish any of this virus or residual effect on others. For the majority it will come and go without much ado and for that I am grateful, may you all be safe, well and at ease.
I am deeply struck by this new normal, it’s impact and how it will resonate in a world filled with both chaos and kindness. I hope to create something that captures the moment.
I have currently put out a call for people to submit their selfies with a paragraph about their experience of lockdown or Covid and I will be creating pieces of either mixed media or purely digital art (with sensitivity and ensuring people’s voices are heard, without exposing them individually, faces will not be recognisable in the pieces). It is a vulnerable and anxious time for so many and it is universal to us all across the world. Within this call out I will also create artwork from my own experience (and have made a start). The artwork will be exhibited on my newly designed website stacieamelia.com (still in progress but shaping up) around the end of August/ beginning of September this year.
Is there anything that you can you do from your place in the world to help bring some healing? Or even to actively hold the space for others midst this? Every action, no matter how small counts.
I hope by sharing all of this that that it will help some of you to really take care and make wise decisions in the next while. The virus hasn’t gone, it’s only that hospitals have a better chance of coping with reduced infection spread.