SHIELDING STORIES FEB 2021: LIVING THROUGH A PANDEMIC WITH A HEALTH CONDITION
Sharing your experiences and stories is so important in helping us raise awareness and understanding. This month's topic is living through a pandemic with an underlying health condition.
Blog 1 By L. Clarke.
Living through a pandemic with an underlying health condition.
I’ve had 30 surgeries in my life, including a stoma, and I’ve always recovered well. Then disaster struck. 6 years ago a hysterectomy perforated my small bowel and my life changed forever plunging me into complete hell. I was in hospital a total of 6 months, told I may never eat or drink again, was fed through my central vein ( Parental nutrition), the hospital was 100 miles from home so I was isolated, my husbands had to finish work and move to temporary accommodation nearer the hospital and my mother, for whom I helped care for, had a further brain hemorrhage and had to go into a home. Without doubt my ‘annus horribilis’. How do you recover from that’, I was asked, well in my case you don’t but you learn to live with it because you have no choice.
The perforation resulted in an abdominal fistula which means I have a connection from my small bowel to skin. I already had a stoma 30 years previously, so I now had two bags and a dressing permanently on my rather mutilated stomach wall. My bowel recovered enough to enable me to eat and drink a limited diet which was a massive plus point as many people with this condition remain on parental nutrition forever. On top of this I developed other rather horrible health conditions and so life became pretty compromised. I became seriously anxious about my body and life in general preferring to stay indoors, rarely going out. Most of the things I enjoyed in life were taken away by that surgery - good food and wine, cooking ( I couldn’t bear to be around food), spa weekends, nice clothes, feeling happy and content – all gone. I was however, fortunate in that I had a loving family, two beautiful granddaughters and twin nephews who filled my days and eased my angst, at least when I was with them. I tried to rebuild my life, to embrace my ‘new normal’ and I succeeded to a certain extent although the ‘trauma demon’ was always there in the background, waiting to pounce. I tried to introduce things that kept me happy in life like a monthly visit to the hairdressers, coffee dates with friends plus of course the children who filled my heart with joy and gratitude.
Then a pandemic hit.
2020 was to be my year of acceptance, the year when I embraced my ‘new normal’ and moved on from the trauma of that catastrophic surgery. I’d been told they could not repair the damage as it was too dangerous and so this was it. In March 2020 with news of this nasty virus taking hold, no one could have imagined what lay ahead and when the Prime Minister shut the country down, my heart sank and those feelings of isolation, fear, and massive uncertainty about the future that had swamped me when my surgery went wrong, came back with a vengeance. At the start we embraced it – a daily short walk enabled us to wave at our little granddaughters over their garden wall, often singing songs to them much to their delight and our embarrassment. The novelty soon wore off though as the crisis worsened and my heart broke as I couldn’t see the special people in my life. The parks were empty and quiet, the streets I’d walked all my life, now devoid of friends and acquaintances. My daughter would walk past the house with the children and we would come out to chat from a distance. She would have to hold the girls back so they wouldn’t run to us – utter heartbreak. Their little faces not understanding why they couldn’t run to nanna and bumpy as if we were now somehow a danger to them. I’d go back in the house after the precious brief encounter and weep at this unimaginable situation we were in.
And on and on it went………. For me personally not going out was already normal for me. My surgical disaster had stopped all of that and foreign holidays were a thing of the past so none of that really affected me. But the pandemic opened up so many wounds for me about how unpredictable life was and the absolute fear of what the future held. I started watching too many news reports and became more and more anxious and depressed………….I couldn’t bear to read of the daily deaths, the untreated cancers and other illnesses as the NHS became the NCS National Covid Service - my heart just broke so I rationed the news watching much to my husbands relief.
The Covid rollercoaster was well underway and for a while things improved and we all hoped the end was near only for us all only to come crashing down again as things worsened and we were locked down once more. My 60th birthday was spent without my close family as my son in law went down with the virus despite being so cautious. We were all devastated and so worried. I spent my 60th birthday googling PPE kits as I thought if my daughter also caught it what would happen to the girls, it didn’t bear thinking about. It’s that ‘anticipatory anxiety’ that I could completely resonate with. Yet another parallel with how I felt when I discovered I had a fistula, not understanding how you can possibly live with a hole in your gut and anticipating and fearing death at every twist and turn. Just like now the whole world were facing the prospect of a very long fight with an invisible and seemingly invincible enemy, with many having already lost the fight.
Seeing and hearing how people were dealing with the trauma that Covid brought somehow validated my own negative feelings when my own life fell apart. When I was displaying anxiety and depression over my situation, I was repeatedly told to be strong, be positive, wise up, stop being self pitying but this had changed my life for the worse, and was just never anticipated, just like the pandemic. My health had been ruined and I discovered after a few years it would never heal and I would never recover as it couldn’t be repaired. They had tried to repair it but I nearly died as I developed sepsis. I think in all the trauma that is the week that was the most damaging for me physically and mentally. I knew I was dying yet no one listened, saying I was fine, that it was normal post op to feel like this. I remember having apparitions of glasses of cold lemon squash as the insatiable thirst took over my every thought. I felt invisible and very insignificant. On the night of 7/3/17 I was literally begging for help but was told to press the morphine pump and go to sleep. The next day I had respiratory failure as my lungs had filled with liquid. I was whisked to ICU with oxygen strapped to my face, I could feel my life slipping away. My head was screaming NO NO I just wasn’t ready to leave. I survived thanks to the Crash team and the brilliant ICU staff, they saved my life. Now three years later I’m reading stories of people being denied respirators and the thought of that fills me with absolute horror.
Respiratory failure is pretty terrifying – try taking in a big breath, holding it, the wrap your head very tightly in plastic so there are no gaps making breathing impossible. What happens then is the terror in your brain engulfs you as you just know death is round the corner unless you get help. The thought of there being no help haunts me, I never thought that even possible in this day and age, it terrifies me……..
So now we are in lockdown 3 as the pandemic tightens it’s grip. The promise of a vaccine is round the corner and we have some hope although again the trauma demon is never far away, although now thanks to some brilliant psychological support, I work around it. My sister and her twins are in our bubble so I can help with home schooling. I can see my granddaughters for occasional childcare but it’s not enough of course but at least I can see them and we talk every couple of days on Skype. Last week whilst trying to grasp the realities of digitised homeschooling with the twins I actually laughed for the first time in a long time. Twin 1 was asking me if there was a God and what did I think of the big bang theory 🤪. Twin 2 was stressing as his laptop wouldn’t connect and he had lost all his work, or so he thought, I was trying and failing to get my head around some algebra question having never even thought of algebra in 45 years, I felt overwhelmed. I looked at all of us together and instead of collapsing in a heap of despair, I laughed, they laughed, we did the algebra, the laptop behaved and my husband explained the Big Bang theory in way too much detail. We then moved onto Greek Mythology and I asked Twin 1 to read out the final paragraph of the myth about Pandora.
“ As Pandora opened the box for a second time, a little bug escaped. It looked at Pandora and smiled and said ‘ I am Hope, and whilst I am in the world, all will be ok’.
The twins looked at me and asked ‘what does that mean aunty’. I explained that in the midst of all the troubles in the world there is always hope and that is what will get us through……..
I get my vaccine next week.
The fistula is still it’s horrible self but no worse.
We remain hopeful that brighter days are coming.
Blog 2 - Anon.
Experiences of shielding.
Back ground and Family dynamics.
Our family is some what complex, two Special Need's children, a disabled husband with health conditions and then myself too with health conditions including IBD. Plus he and I also have additional needs on top.
Husband; " I feel I am a prisoner in my own body, and now a prisoner cooped inside indoors at home and with a body for a prison. Prison within a prison, within a prison as it were."
My husband is now medically retired, due to his restrictive mobility and health issues he is now often stuck at home. From once being able do something to now very little, on top suffering with Severe Chronic Pain 24/7 in every single body joint, as you can imagine is (and can be) Sooo so frustrating and demoralising. There are many time's when he feels all alone and isolated, with very little outside support, and no real friend's talk to.
I've now be come a full time carer and house wife come parent, all the while juggling my own health need's. At moment my IBD is playing up, so past two weeks been stuck at home. When-ever I have issues related with my own health, listening to my body's need's and resting up is a must! Yet very annoyingly my duties go out of the window, however am fortunate my own family and what family relative's I have, they fully understand and give me much needed support ❤ at that time. I do do what can at home whilst feeling under the weather and/or in pain but in general not over doing it is vital.
Before this Pandemic hit we would only go out for shop's or need to ie school run, appointments. From what freedom's we had to now and adjusting to a new way of life being in as my Aunty would put it "Lock in" has been very challenging both mentally and psychologically.
Been three year's since our family taken a yearly week's holiday away for not only a much needed break but also spending quality time together. I would also arrange with my parent's to spend a few day's with them taking the children with me, during Summer Holiday's to allow husband and myself to have a couple's break. Now to some this would be strange but when on top of each other 24/7 it can place a huge strain on the relationship. *With a family relative living close by, they would ensure husband's need's are meet. *My caring duties would still continue at the parent's home
* Note, will not go in to detail's on this!
Pandemic Panic and Lock In.
It was towards end of Feb beginning of March 2020 I had a minor op, then bam shortly there after the Pandemic was becoming very serious in the world 🌎 and panic was struck by all. By then the children's school whom know us very well said be too risky for our kid's to attend school, they may not get the virus but they so easily could without knowing it pass the virus on to us. Upon chatting among families, husband and myself agreed best we would as a family unit to self Shield 🛡, few week's later via letter's from the Government we was told to Shield any way as both my husband and myself are at Clinically extremely high risk!
Nearly a year on and yep still Shielding and very much home schooling where can, for mental well being, my husband does try go out once a week for a short walk. I usually on a daily basis go outside for a walk unless am too busy or feeling under weather, encouraging kid's to join can be rather tricky but will go more on this later on along with home schooling.
Impact on our Family.
Home schooling plus temporary life of lock in can be challenging indeed the impact effect's on our own children but as is we take take each day as it comes and something that our family does anyways because of the mixed family dynamics.
Yes education is very important to us but so is mental health and general well being, not just us but equally importantly for our own children. Like us they are each affected one way and another through this temporary way of living aka Pandemic Lock In, thus to ease pressure at home it is finding a balance between home schooling and free time which is key in reducing stress and anxiety etc. Whilst at home the children here add are learning Home Life Independence Skill's for example how to use a washing machine, self learning etc etc.
Weight, Sleep, Routine and Motivation some of the other challenges we face on a daily basis however keeping postive a utter must.
Encouraging our children go outside with me for exercise can be tricky, Teenager A detests exercise any way and both A and their younger sibling rather be at home keeping safe. A now known fact with regards to Mental Health is that Teenagers are one of the top groups at risk for mental health issues. As mentioned earlier A not one for exercise but willingly now will happily go with their father for a weekly walk, this is a postive step in right direction for our own teenager. Without pushing it adding to the enormous pressure we are all in, either one or both of our children would come and tag along with me for daily walkies now. Child B is sleeping better etc but their own anxiety bubble still lingers, what we worried might happen if they did go back to school has actually happened. Thus through online support NLP4 kid's, we're learning new tools for our tool box to help support both of our children as they face anxiety and stress through this difficult and worrying time, plus we're now learning new parenting techniques etc for us to use and put in place.
Well as Shielding at home, our family is taking all necessary precautions with stuff entering the home to going out following the Government Rule's etc, we are doing our bit for this country and indeed the world all over.
Overall Pandemic Effect on the World 🌎 in General.
Putting aside Government handling, media stirring and Chinese Whispers (no intention pun.) etc the Pandemic has no doubt effected many many people all over the world one way or another and sadly know fair few whom had the virus survived/had the virus and passed away.
Mental health issues was already an huge problem, but now is only going get worse, not just with adults but children too an especially those with additional need's and teenagers and the nearly adult's not forgetting those whom are living on their own.
It is clear the bubble system not working, when have children living under the same roof but are in different bubbles at school/'s these bubbles mix. Even out of school ground's again the bubbles mingle, and many are not adhering to the rules, 80% of people to be precise.
Certainly it hard not going out leading a normal life, seeing family and friend's etc however the Pandemic will not last for ever. Although not easy being postive, keeping a list of thing's to do, may help boost moral (and also could prevent boredom.) like wise a list for when we are all free again.
Pandemic has seen many faces of humanity as brought the best out some of us yet the worst of other's. From selfishness, greed and foolishness to People making jolly video's on line and inspirational people like Sir Captain Tom.
it's said Laughter is the best medicine! A quote from an American Author and Poet Ella Wheeler Wilson (Nov 5th, 1859 - October 30th 1919.) " Laugh, and the World laughs with you; weep, and you weep alone....."
From experiences, bottling up emotions and feelings is a heavy horrible feeling. One should never feel; ashamed, burdened nor afraid to speak up. Find someone you wholly know and can trust, confide in them, it is okay to seek advise and for medical help.
Think of a pressure cooker or even a coke bottle, at some point that pressure could explode but with gentle guidance and right amount of support, the pressure can be slowly released in the right way.
Writing thoughts and feeling's on paper, something one of our good friend's told me. May wish to thrown the bit of paper away or again show to one person you know and fully trust.
My late grandma once told me along the lines never go to bed angry and tell your partner (if have one.) how much you love them.
Throughout the negative's there is always some positives, and certainly coping through the global Pandemic is no exception upon worry, anxieties, stressful time's, and other raw emotions etc for everybody. However there are positives that have shined throughout. For us four examples be
1.) Seeing how grown up A has become and opening up their feeling's.
2.) Our child B learning how to handle there emotions and expressing there own feeling's in a positive manner.
3.) Husband become friend's with some online Gamer's and being able open up and talk to one of them whom also shares some traumatic experiences.
4.) Understanding my daily limits in what am able to do, listening to my body when something is off.
Suggestion's, idea's and thing's to do during the Pandemic.
* Find a hobby, if have one work on improving/expanding it.
* Art's and Craft's. Hobby craft, Wilkinsons, Home Bargains or The Works.
* Through a online map i.e Google map out a daily local walk. See way's how can make it fun, make the route into a shape for example. Fitness tracker, can you beat the daily target set.
* Birdwatching from the Window.
* Baking and Cooking.
* Board Games.
* Work on something you've been putting off for awhile.
* Ok charity shop's are closed but spend one day a week blitzing a room in the house. Clothes can go in a clothes bank, excess waste a Hippo Bag. Recycle ♻️ materials in the recycle bin, local recycle ♻️ Centre.
* Painting and Decorating.
New World, New way of being.
As Medical Science becoming more and and more advanced with knowledge expanding, there is HOPE as Vaccinations continuously being developed and studied
Sadly the old way's has gone, but yet we all can adapt to new way of life. It will take some time getting used to and adjusting but we all can do it, working as unit, working with family, working with friends etc.
One day soon we be all free and getting back to some form of normality. This is a saying I composed as a teenager when was facing another very difficult time.
" It Takes Time to Build But It Takes Seconds to Destroy Yet It takes Seconds to Get Hurt Yet But It Takes Time To Heal."
End. Written by Anon. UK M.
P.s No judgment and no one has the right to judge people. "All we can do is look for positives."