Yes it’s a been a busy sort of week in an odd sort of way.
I woke Monday to the phone ringing, which is unusual. No one on my radar uses a landline anymore apart from my Great Aunty Heather who lives in London and the nursing home where my mother is. It was the latter. My mother had tried to walk without her walker again and had fallen cracking her head open on the door frame. She had been on the floor for two hours as no ambulance was available. I was asked to go to the hospital with her. I had to refrain from reminding them it was their job to make sure she didn’t do this as this wasn’t the first time but where would that get me, nowhere. Of course I would go to the hospital but I had my granddaughter too on that day plus I had my bags to sort out………..and so it continues, what’s the point of complaining – no one cares anymore. I was asked ‘can I go down or not’ by the abrupt annoying carer and I asked to speak to the home manager as I wanted more detail. She told me not to panic, my mother was fine but she had a big lump on the back of her head which I reminded her could be her shunt ( she has a brain shunt following her brain haemorrhage). I gave up at this point and decided ‘go with the flow ‘ was the order of the day. It was right they were sending her to hospital and I was grateful for that.
Sometime later I phoned the hospital to be told my mother was fine but in an ambulance outside as no room in A&E. I was told not much point in going down as I would not be able to go in the ambulance with her and that they would ring me once she had been taken into the hospital. Oh dear what a state of play, knowing my mother though she would be ok with this as long as she was warm which I would hope she would be……………I cannot begin worrying again about this so once more I put it out of my mind.
We had planned to go into town anyway with my granddaughter and we carried on with our day. I had my ears pierced which was shockingly painful on the pocket and slightly embarrassing as I was really nervous and was even thinking of doing a runner. Why do I put myself through these things !
We eventually made our way to the hospital to see mum. I waited around for ages with a bored two year old who was stuck in the car with her Bumpy. I went to the loo and had an awful fright – a lot of blood had come from somewhere. This is how impossible my condition is – It changes from hour to hour. I felt well enough to go into town and even got my ears pierced and now this. So here am I stuck in a hospital toilet, with an alarming amount of blood in one of the bags. I feel ok but a bit shaky. I know if I presented at the desk with these symptoms, I would end up either being admitted or at least having to go through a raft of tests etc. They have little experience of fistula and they tend to go a bit over the top which isn’t a bad thing unless you have a life like I have where Im many things to many people. So I decide to ignore it and just got rid of the blood, washed my hands and and went to the desk to ask about my mother. More waiting until I’m finally told she had been discharged hours ago, everything was normal. They did ring me but there was no answer ( well no that’s because I was here and obviously didn’t think to try my mobile )……Ah well, such is the joys of life with a chronic illness and caring responsibilities. It’s not easy believe me. I return to the car to my beautiful little granddaughter who is so pleased to see me – she is my daily dose of sunshine.
I return home, check my wound and all looks ok. I have no idea why I had the blood loss but I checked my obs and I was fine so I just put it to the back of my mind. I’m not sure if this is the right approach but I know from the last 3 years of hell, if anything serious is going on inside, I would know soon enough. If I reacted to every little thing that this fistula chucks at me, I would be in and out of hospital far more than I am. I have to learn to react to how I feel not what I see. So even if It looks bad or as in this case, I lose blood, if I feel ok then I go with the flow. It’s hard though and something I do struggle with as I can’t turn a blind eye as it’s in front of me 24/7.
I was very pleased to find I woke up the next morning! It was Pancake Tuesday and today I had my granddaughter and the twins. I phoned the home to enquire about my mother to be told by someone with the empathy of a potato – ‘she’s back to normal, trying to ram the wall with her wheelchair ‘. I sigh, after 6 years of this, I don’t know how to react anymore – I feel sort of numb. Plus I have no one to tell – If I tell my husband then he just gets grumpy and says ‘ well why are you surprised, that’s what she does ‘ ( he doesn’t do feelings anymore, he just wants to fix everything when all I want is for him to just listen sometimes ). If I tell my Aunties, my mother’s sisters, then they will be upset and may secretly be up in arms about her being ‘in that place ‘, we all feel that believe me but I really had no choice. If I tell my sister she will say very little but probably worry – another of my family who doesn’t do ‘talking’ or feelings. A very closed book. But then as a single parent juggling two jobs, and two kids its not easy especially when my mother was such a big help to her. I tried to step in but I just don’t have the stamina any more. I don’t want to burden my daughter who is so kind and considerate but has her own life now. But that said, It is horrible having this sadness of my mother, to bear alone. But again I push it to the back of my mind and carry on with the day. No more blood but feeling fragile, take painkillers as necessary and just get in with it. We were taking the children out for pancakes and my sister was supposed to be bringing the boys there after school. They eventually arrive at 345 with grumpy faces as they quite rightly weren’t allowed to bring their iPads. At this point I did have a mini meltdown, I don’t think I have ever shown them that I (Aunty) does have limits too and a little bit of appreciation wouldn’t go amiss but if they rather be on their iPads we could go home NOW. They looked a bit shocked and cheered up rather quickly. We ordered our pancakes and I have to say I think we were ripped off. £20 for 3 pancakes and 2 coffees. So my mood was not good and I felt fed fed fed up. In the car going home one of the twins said he was hungry and I agreed to make more pancakes – he ate 7, his brother ate 3, husband 2, me none – happiness was restored. Sometimes I try too hard to please everyone, I thought taking them out would have been nicer but it wasn’t and they were very happy at home, we even took turns to toss the pancakes and they took pictures and laughed at Aunty. ❤️
Next day is Valentines Day. I always buy for my daughter and sister, just something small and this year was no exception. My husband and I don’t bother anymore as to me, kind gestures mean far far more than ‘stuff’ and in years gone by he has annoyed me by buying something really over the top when all I wanted was a kind word and a cup of tea. Plus two of my friends have recently lost their husbands so I couldn’t even make a joke about my Valentine ‘non event ‘ day, as I know they are struggling and would be annoyed at me for being ungrateful. I do appreciate everything my husband does for me and even though I always seemingly berating him, he has a good kind heart . It’s just he has to be told everything, why doesn’t he just know. Man thing I’m told. But I think it’s when you have a life changing event such as we have, everything changes as everything is different now. Everything I used to do but can no longer manage, he does and on the basis I’ve always done pretty much everything around the house and garden, let’s just say his workload has increased massively !
I’m grateful my fistula allows me to eat and drink and thank God for this every day. I just don’t think I would cope on permanent TPN ( where you are fed through your central vein ) but people do and if it’s a choice between that and death, then there is no choice. With that in mind, I enjoy several glasses of pink fizz with my husband and another Valentines is done .
So with all the stresses and strains of normal life, plus the massive problems the fistula cause me, I do try and have some me time. I am better at saying No but it’s so difficult when I have both elder and younger caring commitments , I do what I can. My husband fortunately is very good with the children and without him I couldn’t do it. I also enjoy going to the hairdressers and having a pedicure which is where I went on Saturday. Something very indulgent about having someone play with your feet for an hour but it was very nice and relaxing. I walked home through our lovely town. I have become very good at avoiding any form of exercise and I’m not doing myself any favours. So the walk was good. At 2.30 I was stood on the town bridge looking at the swans and it was pin-drop quiet. I arrived home south 15 minutes later to hear on the news there had been an earthquake in our area, and I hadn’t heard a thing !
So that’s my week. Today has been busy, the twins came for help with homework and I made dinner for all, Including home made Yorkshire’s which turned out really good. I, of course, can’t eat a normal dinner so I grazed and I’m grateful I can do that. Felt well today fistula wise but going down hill now, always worse in the evenings.
So it’s Endeavour on the TV, a few glasses of Prosecco, then my meditation app and then hopefully sleep perfect sleep………