Pre Virus

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 16 weeks now (4 whole months). I began ‘quarantining’ off my own back early in March (official lockdown began on the 23rd)

The Virus

Unbeknown to me I had already been exposed in the first week of March. So this is my Covid -19 experience.

My symptoms started with a sore throat that lasted 48 hours. Along with that was a high temperature which remained although spiking up and down. Then there was a small gap before I began having incrementally increasing shortness of breath and a higher temperature. I didn’t think for one minute initially that it was Covid as I was not coughing nor did I have ‘severe’ fever (37.7) I also lost my appetite, everything was tasteless.

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 began to have a couple of days of a sore and upset tummy. I increasingly became 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. 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 increasing breathlessness, high temperature, upset tummy and signs of my daughter having a high temperature and onset of lethargy and cough I decided that I would phone the dedicated service.

I didn’t think I had Covid not really, not in my mind initially until the second week. I didn’t understand how I could have caught it, until I learned about the incubation time. It felt odd, it was an ‘odd’ experience, in that second week I 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 at all (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 (the cough had started the previous day but was mild) she heard it was dry. 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 in that moment in time to test me however, unless I needed hospital treatment (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 the symptoms at home. If I got worse I was to call back. I did get worse but not desperately, I did not call them back though. I was afraid of needing to be in hospital and leaving my daughter on her own with her own symptoms in isolation and lockdown. I just kept telling myself it would be ok, I wasn’t gasping for breath just struggling a lot. I could use breathing exercises and relaxation and told myself it would pass. I just stayed with it in the moment.

The Treatment

The steroids really helped for 4 days until the dose dropped and then finished. Day 5 and 6 of this treatment (days 15 & 16 of the virus) the symptoms returned much stronger, I now had heavy and tight chest pain too. It was much harder to breathe (not gasping though so not critical just much harder to draw oxygen. I never felt I had taken enough breath. Realistically I should have called and had oxygen at home) I called my GP for more steroids instead though and he also prescribed 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, it took 3 and a half weeks, I awoke and could breathe again. No fever or other symptoms, it was gone. I still can get breathless if I talk too much or exert myself and know there is a possibility of some long term damage but I’m choosing to believe the best possible outcome as a mental attitude.

Spread

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 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 confusion and much reduced appetite.

I am finally starting to recover from it 12 weeks on (post virus) and never in my lifetime have I known such a thing. It may take some more time with the smaller 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. My usual resilient bubbly temperament 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 and I cried with relief about that. It all became overwhelming and I lost my inner balance, hospital was the last place I wanted to be in a pandemic given there is no idea yet as to whether there can be reinfection or not. I succumbed in the last month. Completely lost inside, regressed to a state I’ve not known for a long time. Stressed is an understatement and felt the full vulnerability of this fragile human life. Composure had dissolved for that time. The confused state and exhaustion had become too much to function and relate interpersonally. It was like the world was carrying on as if I was the person they have consistently known and were expecting that I was functioning in a usual way. I wasn’t and I tipped onto an overwhelm. I was not coping for a bit. I’m just thankful it was a brief enough time in the scheme of things and that I shifted out of that state again as quickly as I went in. Relief.

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 much confusion mentally. All was arising and I had no control other than doing best to rest. I hadn’t the capacity nor resources to pull myself out of whatever mind state I found myself in to function in those weeks with any coherence. As mentioned I experienced a level of inner regression and I found myself caught up in 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). Many of my friends were speaking with me as if I was the usual lucid person they have known and I was trying so very hard to be that, but I just wasn’t. I was exhausted, in pain, confused and strung out.

I had no idea how ill I had actually been until recent interactions with the medical team whom explained much to me. I now know I should have had oxygen at home. I know now the extent of what was happening. I fought it despite the lowered T & B cells from my treatment and I also have recovered well from the post viral fatigue.

I feel grateful there was understanding from others for what I was enduring, particularly from those whom could read that something wasn’t right within me, choosing not to take things at face value and checking because I was quite off (significantly) in my communication and presence from the ways in which they have known of me. My poor daughter has never known me in such a state. I had managed to keep so well mentally with it by just ‘being’ for most of the time, trusting things will be okay. I did what I could when I could eg. digital artwork, knitting, taking photos and being in the garden, meditation, visualisations etc but unfortunately in those final few weeks I just broke, it got me. I tried using positive affirmations and outward messages of love and kindness in the later moments as in earlier times of life struggle I used to as it was a way of also offering help to others at the same time but in this moment it just wasn’t congruent. I tried, that’s all that could be done. I am deeply grateful though to those whom were able to hold the space, understand and see the difficulty for what it was, for taking the time to ask what was going on when noticing that something was off in my way and for not taking it at face value. Also much gratitude for the kindness that was demonstrated in response. 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 so I’m again very grateful, not often I receive them so they were a lovely gem. Also there was a wonderful surprise gift of a Westie sculpted 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. Forbearance is usually a strength of mine from life experience and this beast of a virus broke me. I have such deep gratitude for the noticing, patience and understanding shown though.

Mostly I was just getting on, keeping a stable mind within it but around the end of May I just cracked. Confusion had been pervading and took over my being.

I was very, very ill and I know now that I was having more severe symptoms than I realised in the moment but I managed to fight it at home without intervention so I’m deeply grateful to whatever made that so. Such empathy and sadness for those whom were (are/will be) much worse needing hospitalisation and/ or sedation for ventilation and more so to all of the families of those souls whom never made it.

To all of the long haulers out there who are ill for months, you have my full understanding, empathy and support.

Finally Healing

Finally now I am able to walk about no chair needed, as if overnight I am a hair off functioning fully again (being careful as there now needs to be strength and muscles rebuilt)

My Message To You, The Reason For Sharing This Information

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 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 made a mistake of pushing myself too far one day which knocked progress back)

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 but please think of others before yourself. Your physically vulnerable loved ones, and others’ loved ones.

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 going forward.

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 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 ‘out of order’ notices.

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 of course most people are 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. Surely you don’t want to be the reason someone suffers or dies.

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 intentions for a future way of being in this world. I am finding the slowed down pace and the more focused time on spiritual, nature earth based and relaxation practices more in keeping with heart energy. 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. I have no plans to return back into anything resembling life prior to this virus and choose to keep this balanced pace. Mind and heart are so much clearer for being well, it was a beast of a virus. I have learned a lot about life in that space. 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. 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 my patience and tolerance felt short but in the end but it doesn’t matter. I don’t wish any of this virus or it’s 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 and affected very little.

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 artistically 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. There will be more Covid -19 experience to come for so so many.