Struggling

I’m struggling. My head’s all over the place at the moment and I’m finding life hard work. 

I’m trying. I really am. But it feels like I’m wading through treacle. Everything requires so much energy and I’m drained.

I reckon that at the moment my physical health is about 50:50 good days to bad. Compared to a year ago that’s pretty good going as it was probably a 90:10 bad days to good but I’m just so frustrated and fed up. I look around the house and see a million things that need to get done. These can be little things such as trying to keep on top of the laundry, right up to big things like getting on top of decorating and DIY in the house. But there never seem to be enough hours in the day when I’m feeling physically well enough to get stuff done. 

I’m picking fights with Hubby over really stupid stuff which isn’t fair because he’s got so much on his plate already. He’s working a lot and under a lot of pressure with his job and then he has the added burden of me, my health, my moods. Some days I cannot physically get out of bed; either the pain is unbearable or I’m so exhausted that putting one foot in front of another is simply too much. On these days Hubby has to take on additional tasks like walking the dog, cooking the dinner, taking the kids to their sports activities and all the other things that I would normally do. And we never know when the bad days will come so it makes planning impossible. 

Take today as an example. The dog was at doggy daycare- he goes once a week to give me a rest from walking him and he loves it. I had to drive the kids to school as Big Fella slept through his alarm and would have missed the bus. On the way home I stopped off at the post office to post an parcel and some birthday cards. When I got home I felt like shite and wanted to go back to bed but knew if I did then nothing would get done. So I took my painkillers and powered on. I did 2 loads of laundry as none had been done for 3 days and the laundry basket was chokka. I hand washed Big Girl’s netball dress- remind me to get a machine with a hand wash feature when this washing machine needs replacing! I did a bit of ironing- it was mainly school uniform and it took me about 30 minutes. It was now lunch time and somehow three hours had passed just doing these basic chores. I’m so much slower when I’m in pain and everything takes me longer. I made Hubby some lunch cause if I didn’t then he wouldn’t eat as his day seems to consist of back to back zoom meetings (he’s still working from home full time. He will have to go back into the office at least a couple of days a week soon and the thought fills me with so much dread and anxiety. His office is almost 2 hours away from home and I’m starting to panic thinking about what will happen if I get really poorly and he’s not around.) Anyway, I’m exhausted and feel really crappy so I give in and go to bed for a lie down. But then Big Girl texts to say she’s got no bus fare for the journey back from school so an hour later I’m in the car driving to pick her up. I’m determined to cook the family a decent meal as the last 3 nights I’ve been in bed at dinner time and God only knows what they’ve been eating. Big Girl tends to cook for herself and is pretty good at making decent, nutritious meals but Big Fella is such a fussy eater that he’s sucked all the joy out of meal times. Hubby and I find it a nightmare to feed him and I know that Hubby hates the days when I’m not well and he has to sort dinner out. So today I decide that I’m going to do a Sunday dinner type meal; it’s one of the few meals that all three of them will eat and as well as getting fresh veg into them it means I only have to cook one dinner instead of three. I’ve a load of potatoes that need eating so I decide to make a cheesy potato gratin. This is not something I’ve ever done before but I’m trying to reduce our food waste. So I cook a gammon joint, make the gratin, steam the veg and even make a lemon drizzle cake (from a packet mix though!) We sit down at the table as a family but I’m so tired I can barely sit and end up lying with my head on the table. When everyone finishes I load the dishwasher and then come to bed. I feel like crying because although I’ve barely stopped all day I feel like I’ve achieved nothing. My to-do list has had nothing crossed off and just doing basic housework and parenting has left me exhausted and drained. 

And then there’s the other side of being chronically ill; I’m lonely. Although Hubby is working from home his job isn’t one of those ones where he does a bit of work then comes for a chat or to watch a bit of tv with me. He’s at it full slog from 7am to at least 7pm, and some days even later than that. The kids are at that age where they want to do their own thing and I don’t want to be one of those parents that holds them back. I’m very conscious of making sure that they never have to think ‘but what about Mum?’ when making any life choices. My illness has had enough of an effect on them without it clipping their wings when they’re getting to the age when they should be going out into the world to explore. A lot of my local friends work in the day and then I’m knackered in the evenings so it’s not always easy to arrange a catch up. And then my other friends live hundreds of miles away so in person visits are scarce and everyone is busy with their own lives, dealing with their own shit. So where does a 40 year old woman, whose health makes her unreliable and unable to plan things, meet new people? If anyone has any ideas then I’d love to hear them! 

And always at the back of mind is the constant fear of becoming dreadfully unwell again and needing to be admitted to hospital. And on top of that there’s the uncertainty of when I will finally get operated on. And although I'm desperate for that to happen I'm also terrified. I’ve had to consent to the surgeon basically opening me up, taking a look at my insides and then deciding what to do when I’m on the operating table. Chances are I will end up with a stoma again and that is scary. The whole reason I had the reversal surgery was because my stoma kept blocking and didn’t work properly and when I had a temporary stoma in the 6 months between the two ops to ‘join me back up’ it was such a high output stoma it made life impossible. By high output I mean that litres and litres of loose, watery stool would pour constantly out of the stoma making it almost impossible to actually get a bag on and to stay on. I remember in St Marks it took two stoma nurses nearly two hours once to actually get a bag on. And when I was home the bags leaked constantly so it made going out of the house near impossible. So what if I end up with a stoma like that again? Just thinking about it makes me feel sick. I’m pretty sure I could do with some kind of therapy to talk through some of this stuff but I don’t want to tell my GP or gastro consultant any of this incase it gets  used as an excuse not to operate on me. I already know the surgeon isn’t too keen on operating and I don’t want to give him any reason to say no. So instead it just goes round and round my head. 

In order to try to progress things I’ve made an appointment to see a private colorectal surgeon in 2 weeks time. I don’t know if going private is an option, or even how much it would cost, but I feel like it’s something I need to explore so I can say to myself I’ve tried everything to get some quality of life back. I honestly have no idea how long I will need to wait to get the surgery on the NHS but I’ve got a feeling that because I will need a HDU/ITU bed afterwards that a private hospital won’t be able to accommodate that. But I could be wrong. I also have moral issues with private healthcare because I don’t think it’s fair that if you can pay you can jump to the front of the queue whilst those less fortunate languish on a waiting list. But then if it means there’s less people on an NHS waiting list then that can only be a good thing, can’t it? See, I’m a tormented soul 😫