I’m not a lover of extreme temperatures and to me, used to living here in rural West Wales these temperatures are pretty extreme. Plus having two stoma bags to contend with just make it rather unpleasant at times. Whereas previously the fistula bag used to leak all the time, it now melts onto my skin which makes removing it a rather arduous task taking several hours every other day if I’m lucky.
Life has been busy since the heatwave hit. Hot weather means lots more stuff going on and as I’ve said before my husband is rather a social being and will never turn down the offer of a ‘jolly’. I’m not in the same league, never was and it didn’t really matter before but now these things take much more effort on my part.
So we have been out and about quite a lot and had a few family BBQs. In my head that is all fine, the buying and the planning all comes as second nature. What I find is, on the day I quite often don’t have the energy to carry it out and feel overwhelmed. But people just do not understand unless they too have experienced chronic illness. I look well on the outside as I get on with life but inside it’s different. I’m in constant discomfort, clock watching for medication and hoping this latest alarming symptom isn’t going to turn into something more serious. I also find that once the batteries have run out then that’s it, until who knows when. ‘Sit down and have a cup of tea ‘ helps enormously but don’t expect me to get up again any time soon. I’ve tried to explain this to my nearest and dearest but it’s a losing battle with most of them. My husband by his own admission is a dinosaur and devoid of any empathy unless I’m seriously ill.
I expect this need to pace yourself when you have a chronic condition is explained far better by The Spoon Theroy :-
For people with chronic ‘invisible’ diseases, there is another level of thought that has to happen as you consider what your body is capable of in any one day. One chronic illness sufferer explained it by us having a limited number of spoons (energy) and so we have to use those spoons very carefully.
Faced with a friend asking what it was like to live with chronic illness, she started explaining the aches, pains and other symptoms she dealt with on a daily basis. But she soon realised just explaining was not enough; her friend needed to experience it.
The spoon theory, uses a handful of spoons to explain how every action taken by someone facing a chronic illness represents a ‘spoon’. While a healthy person may have an unlimited number of spoons, the chronically ill only get a certain number of spoons per day, and once they are all gone then that’s it – no more spoons (or energy) for the rest of the day.
“I asked her to list off the tasks of her day, including the most simple. As she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon.”
Some days you might have more spoons than others and be able to achieve more. But on others you might have to borrow tomorrow’s spoons, knowing that you’ll be left with less for the next day. You might have to choose between making dinner and getting the household chores done etc.
“It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count spoons.”
Figuring out what you want to spend your spoons on means sufferers of chronic illness are all too aware of the importance of time.
My life is not really conducive to counting spoons. I can just imagine me telling my husband that I’d ran out of spoons – he would mutter ‘gobbidy gloop clap trap’ no doubt. I want to be part of my family’s life but it is all rather busy yet if I say no, I feel bad as if I’m letting the side down plus this fistula has taken too much from me as it is. I know I have to find a way of living with this as there is no cure. More surgery is tempting but could kill me so I cannot risk it yet. Not now.
I’ve been ok the last couple of weeks apart from more pain in the region of the fistula. This usually means something is brewing but I’ve been managing it with pain killers and rest ( when I can). I can never really relax though not knowing what is going on inside and what damage is it causing. Is it getting worse or better, I just don’t know and that’s hard to deal with. I haven’t taken antibiotics now for almost two months which is good but I’m having quite a problem the last few days. I awoke this morning about 8, after a very restless night. The heat was oppressive, the cat kept finding a way in and I awoke several times to him pawing my hand for me to get up. ‘It’s 4am Sooty, bogg off ‘ didn’t work. So I shut the bedroom door………more on that later.
So as I said I awoke at 8 and my fistula bag had leaked and I was was covered in blood. It looked like I had been stabbed. I felt ok, no chills, no high temperature, no rapid heart beat – having had sepsis you never forget. But I was in some pain so I thought il ring doctor…..for some reassurance (oh hang on, things have changed, remember )
The recorded message tells me I’m 9th in the queue. This is quite normal and I wait about 20 minutes to be answered by which time only emergency appointments are available. The conversation went like this –
Receptionist (let’s call her Rotty) – well what’s wrong with you exactly. (She was actually laughing at something as she answered the phone which was instantly annoying. But then again I am Mrs. ANGRY).
Me – I have a fistula and it’s bleeding
Rotty -a cyst is it ? Weeping cyst is it ?
Me – No I have a fistula, am enterocutanous fistula and it’s bleeding more than Im
used to. I’m not sure if it’s an emergency that’s why I need a doctors opinion.
Rotty – how do you spell, um, what did you call it?
Me – 🙄🙄🙄 🙄 ( give me STRENGTH)
So she finally decides she doesn’t know what it is and so cannot assess if it’s an emergency or not. She asks her colleague who I know is completely medically untrained who decides it’s not an emergency and a phone call will do. The procedure at our surgery is, I now wait in all day for a doctor based 80 miles a way to ring me who will probably tell me to go to A&E or to make an appointment to see my consultant who is also 80 miles away from me. All I want are some blood tests to make sure all is ok so we shall see what happens. It’s now midday and no phone call. Even though I don’t think I will have the luxury of growing old, if I do I actually dread becoming incapable and more invisible than I feel now. It frightens me.
Whilst I was on the phone to Rotty, and unbeknown to me, the care home where my mother is, had rung. They had left a message at 530am this morning, could I ring them back NOW. This is why I never shut the bedroom door, so I can hear the phone. Thanks for that Sooty.
Anyway I ring the home and am told she has had some kind of seizure in the night, was foaming at the mouth and screaming, and has been rushed to hospital. My heart is now racing ( anxiety not sepsis hopefully) as I phone the hospital to be eventually told she is fine and has been discharged back to the home.
Not even mid day. Not a spoon left.