So many times people hear the words ‘chronically ill’ and imagine someone sat up in bed eating a bag of potato chips and watching soap operas all day or lingering and depressing … However nothing could be more wrong!
I can only speak for myself, however on any given day I am never just resting comfortably in bed (or anywhere for that matter), and it is a rare day that I will be snacking whilst watching soap operas during the day; and neither does my full time carer and husband.
I can honestly say that there has never been a day in which I am not trying to do things or achieve as much as I can, even if it has had to be from the confines of my bed or chair. (Many times I have vacuumed the floor from my wheelchair!). In our home we are either doing something or just physically unable to do it, which will include normal things like eating or watching tv.
Just prior to becoming medically retired from my career I worked from my home and from my bed, and let me tell you they were long hours! Whilst I will always be eternally grateful to my employer for allowing me to try and hold on to my career for as long as I could it was incredibly difficult and it was only a matter of time before I couldn’t keep it up any longer. I recall days of typing reports half blind and vomiting into a bucket beside my bed!
And before my husband made the difficult decision to retire from the workforce he was trying to work 12 hour days and then be a carer for the remaining 12 hours. It was a lot to do and he naturally couldn’t do it all, even though I was trying so hard to assist. There is little flexibility offered to the partners of the chronically ill/Autoimmune/disabled. Many employers today will not hire or keep on staff those who care for their adult partners. Thankfully it seems they are a little more flexible towards employees with sick or disabled children.
I have immense respect for partners and carers and so should the rest of the world. Despite having to help your partner eat and dress, the daily act of seeing your loved one in tears of pain and wanting to give up must be incredibly heartbreaking! I can’t praise them enough!!
Even though we both may have retired from the regular workforce there has not been a single day in which we haven’t had to put in 100 percent and some very long hours. I have always tried to keep myself mentally and physically occupied, as that is my nature. I can honestly say I work harder as a chronically ill / disabled person than I did as an able bodied person because everything is so much harder to do and it never stops.
I recall many years ago how hard things felt and how disruptive it was to the daily routine whenever someone in the relationship had a flu or had sprained/ broken a limb. Or the chaos caused by a virus or stomach bug felt insurmountable! I can only wish for those days now! … How strange that all seems compared to now.
Nothing just stops because you are chronically ill or in pain. Nothing. The world still keeps turning. Housework needs doing. Bills need paying. Groceries need buying, just the same as everyone else, only we are trying to do it all with no sleep, crippling pain, limbs that don’t work and with vision/ balance issues etc… but somehow we try to figure out how to do it… Somehow it just has to be done.
My passion for wanting to advance the cause of the chronically ill came from being thrown into this life and having had to struggle through it, alone. The silent battle that goes for millions of sufferers all over the world needed to be told and awareness needs to be raised!
I was far from happy with the current levels of understanding, the lack of respect and the social stigmas surrounding chronic illness and autoimmune diseases and so I started blogging, introducing Facebook support groups and starting a charity for chronic sufferers out there. Anything I could do I did! I still don’t know how I have managed it all sometimes but I owe a lot to my husband, my dearest friends and my fellow sufferers.
The rest has been sheer stubbornness, nativity and drive.
I don’t believe being chronically ill should conjure up visions of lazy people laying around and sleeping all day. We don’t get pampered and we don’t get droves of people trying to help us and empathizing with us. Often it is the complete opposite!
Many couples with newborns receive much more understanding and support than those who face these debilitating diseases and I don’t think that needs to be the reality.
Being chronically ill isn’t a lifestyle choice and I don’t see myself (or other sufferers) as a drain on society. I paid and still pay my taxes and I volunteered for many years when I was physically able to do so. [We] are no more a drain on society than anyone else facing a major life change. We are still human and worthy of respect.
My husband and I work hard to keep going. We rarely sleep (due to pain and accompanying symptoms) and we have never sought out help (financial or physical) from friends or family in all these years. We have done it all entirely alone.
Occasionally we have been offered help from total strangers and we still find it completely surprising i.e. the lovely lady who comes regularly to take my bloods offered to come by and sit with me while my husband got some much needed sleep. I was moved to tears.
You see despite all the social stigma and judgements, the chronically ill just have to keep on fighting, all day and every day. We don’t have holidays from our circumstances and Our pain. We don’t have paid vacations either. Often we don’t get to celebrate milestones, birthdays and attend parties And yet we still try and keep going… somehow.
This year we have undertaken to renovate our home to make it more accessible and comfortable. My husband and I have been overseeing all this, and we have also been running various business interests, taking care of our young furries AND managing some of the hardest pain and difficulties to date!
So the answer to the question ‘What do we do? … is Everything!
To all of you out there who are doing all you can and managing as well as you can I salute you. Your efforts and struggles are not overlooked by me and it is my sincere hope that one day more people will recognize them too!
As is often the case, it is those looking up from the bottom that see nothing, but those who are struggling to get to the top see the bigger picture.