Looking back with fear to this day last year………

One year ago today I nearly died. I was given minutes for them to get air into me or my heart would stop, I remember it all. I remember them words ‘ this lady is going to have a massive heart attack if we don’t act quick’. It was the NHS at its best, the crash team, the whole shebang and they did save my life, but il never forget.

Not usually one to dwell on really bad experiences, this is different, this won’t go away.

I remember the day so well, I woke up sad that I’d woken up, I felt that ill. I don’t think I was believed as to how I’ll I felt, as I had had major surgery twice in the last few days, and it was sort of expected. Until they took my temperature which topped 104. Doctors were called and sepsis mentioned. It all happened slowly yet I could feel myself getting weaker and weaker. My husband arrived and I could see the sadness in his face as he looked at me realising I was not improving. He encouraged me to try and sit up and he put his arms around me, I could feel his tears fall on my neck as I told him I couldn’t do this anymore, I just wanted to go to sleep and not wake up.

I lay down, he held my hand, nurses flitted back and fore and then it happened – my lungs stopped working , I could not breathe, there was no air. The rest is history and I can’t relay it all again even to myself.

I recovered from the respiratory attack quite quickly. I was told sometime later the nasogastric tube had become displaced and the nurses hadn’t noticed. My stomach filled with copious amounts of bile which eventually squashed my lungs so much there was no room for them to inflate. Hearing that terrified me and still does.

But I am here and a year later my lungs at least seem to be ok. The rest of me is still struggling to try and continuously heal this fistula. My poor body is trying so hard to heal yet I don’t think that is possible without more surgery. Once you are in this situation there are rippple effects as my limited diet now means I’m anaemic which will compromise my immune system. I have a very sore eye again which shows my body is struggling with all of this. At times I think how much can one body take.

Have a busy day planned and I will be so glad when this day is over. Despite my moans and groans, I know we live in a beautiful world and I have many people who I love dearly, I’m not ready to go anytime soon ❤️

Started with a nasty fall, ended with an earthquake 🙈🙈🙈

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………

MRI, the results, and other news

As it’s six months since my last MRI, my consultant suggested we do a new one to check progress or not, as the case may be.  Add onto this the fact I have been unwell with some other oddities for the past few months, it seemed like a good idea.

My GP had given me antibiotics a few weeks back and I did think they were helping – the output from the fistula was less and things weren’t looking so angry.  My eye seemed to be settling down but I had developed a cold sore from hell on my face!  It started off as a spot by my lip and grew into something oozing and angry,  just amazing,  I’ve never had these problems before and found it quite embarrassing walking around wifh this giant Zit on my face.  Anyhow I transgress……..

On Friday the 2nd of February I had my small bowel MRI with contrast.  It’s ok, not painful but not pleasant.  You have to drink a litre of a carob bean based drink to line your intestines – it actually acts as a laxative which is not great for anyone let alone me.  You then have to lie flat on your back for an hour ( painful for me ) whilst you are transported into a coffin like tube .  They give you earphones as there is lots of noise as the magnet does its job.  They speak to you via the headphones asking you to breathe in for 20 seconds etc.  At one point they bring you out for a needle to be put in your arm to administer the contrast.  They also give you a shot of buscopan to relax the bowel and warn you it may make your vision go very blurred.  On the basis I’m blind as a bat without my glasses,  I didn’t notice any difference.    After what seems like a lifetime they say ‘all done’ and out you slide.  They aren’t allowed to tell you anything but say they’ve had some good images – they like scanning me because I’m interesting apparently.  I’d rather be normal and boring thanks.

My increasingly unsympathetic husband sulks that we cannot go shopping 🙀and have to drive straight home.  All I want is the security of my little bungalow and a nice cup of tea,  whilst watching The Chase,  yes I am BORING!   The journey home takes an hour and a half and we have to stop at the services as the carob bean does it’s job and makes me quite unwell.    We then nearly have a nasty smash ( not his fault ) as a massive juggernaut type vehicle kindly pulls out without looking.  Husband is then even more angry whilst I am a quivering wreck……..

A few days later as luck would have it I had two consultant appointments,  one scheduled months ago and one for the results of the MRI.  Owing to the limitations of the NHS I went private for this MRI as I needed to know what was going on,  hence the quick results,  I’d normally wait 6 weeks.  I saw my first gastro consultant at our local hospital who immediately stopped the antibiotics the GP had prescribed saying how bad they are for the gut and will do more harm than good.  She said in the absence of elevated white blood cells, antibiotics play no part in this.  I said I did feel better on them and she said well I may do for a little while until all my good gut bacteria were gobbled up and I would feel worse.  I told her how upset I feel that there is no treatment for this and I just have to go through life feeling under par.  She sympathised but agreed it is a very difficult condition and I am unusual in that there is no obvious cause,  without an obvious cause, there is no treatment as such apart from when I get really ill and then I can have antibiotics.  Oh lucky me.

So our next appointment is in Cardiff and we travel in silence as the strain of this illness tightens it’s deadly grip.  I have to be cheerful and positive all the time to be bearable apparently and I do struggle with this requirement.  I was very  disappointed at the antibiotics being stopped as I thought they could give me some stability so I could feel better, but this was not to be.  We arrive in Cardiff and  I see my consultant ( the main man) who is his usual lovely self.  He says the MRI hasn’t shown anything new, just confirmed this cavity in the pit of my pelvis which is ruining my life.  The cavity is probably attached to the small bowel and the radiographer suggested another scan for more definition.  It did say it was no worse and all my other bits and pieces were good, Nothing abnormal detected in kidneys, liver, pancreas etc.  No Chrons disease evident.  So what is causing this.  I am an enigma it seems.  He agreed I look run down ( could hardly miss the ZIT).  I look tired he said and I should rest.  My cousin has an apartment in Tenerife and I’m so tempted sometimes to take him up on his offer of a long long break.  Away from the stressful life I sometimes have,  but I have commitments to the children who I love so dearly,  and I would find it hard to walk away from them.  But I am tempted sometimes to do a Shirley Valentine 👏👏

So what else has happened.  I’ve spent most of my days on the phone  to stoma companies who are helping me find a suitable pouch for the fistula.  i potter around the house and see my granddaughter and nephews who make me happy.  I watch TV and rest, my husband is returning to work so I’m on my own a lot of the time which is fine by me.

Yesterday was my mother’s birthday.  We all went to see her in the home she is in following her brain haemorrhage almost 6 years ago.  She was awful.  When we got there I could see her shouting at the carer.  She looked ill, has lost weight.   She cried,  I cried.  I said to the carer I thought she’d looked pale to which the carer replied ‘‘well when did YOU see her last’’.  That hurt,  cut through me like a knife.  Il admit I hate going there and I know it makes her worse,  she sees me and thinks I’ve come to fetch her,  I’ve been so down physically and mentally I haven’t been since before Christmas and this particular carer rather nastily reminded me of that.  As if I didn’t already know.  My sister has been there of course but she doesn’t tell me much as she knows how I struggle with everything at the moment.

The  house by the sea dream is heightened, I’d take my mother and hire a carer to help me.  She needs 24 hour care but she needs us too and I can’t do it alone.

Off to buy a lottery ticket,   I can but dream.

Feelgood Friday

As I’m having an ok week and a good day today, I wanted to write it down.

I’ve been on antibiotics now for a week. I think they are helping as I have had a better week but of course with the demon fistula I can never be sure. Had a week of appointments what with optician, stoma nurses and ENT clinic but all been fairy ok. The optician has diagnosed me with Episcleritis which is this –

Episcleritis is a benign, self-limiting inflammatorydisease affecting part of the eye called the episclera. The episclera is a thin layer of tissue that lies between the conjunctiva and the connective tissue layer that forms the white of the eye (sclera). Episcleritis is a common condition, and is characterized by the abrupt onset of mild eye pain and redness.

It’s all to do with my general health of course and I think it does feel slightly better today. I then went to see my stoma nurses who was accompanied by a specialist wound nurse. I spent a few hours there being assessed and they tried a new bag on the fistula. All looked well but by the time I had got home, it had leaked which totally floors me. So my good mood was brought crashing down as I had to start from scratch again. I suppose I struggle more with the fistula than the stoma because of the circumstances in which it came about plus compared to my stoma management, its a nightmare. I’ve had my ileostomy 32 years and it’s no problem at all but this is a right pain. Probably because the hole is in a ridge on my stomach wall and so it’s very hard to find the right bag that actually sticks. Plus it’s all the things that come with it, the infections, the feeling unwell, exhaustion, more grumpy than anyone should be………..

Today I have been out the garden. I did some cleaning up and brushing, it was nice to feel the fresh air and the occasional glimpse of the sun. I also cleaned up lots of cat poo. To add to my exciting life we have an elderly incontinent cat, thank you world. I do find it frustrating as there is so more I want to do around the garden but it involves moving and lifting which I can’t risk and therefore have to rely on my husband who isn’t as fussy as I am so I get ‘ why do you have to do that NOW’ or ‘have you considered this or that ‘. It’s very frustrating as in all the years gone by I did all these jobs without him even realising. He probably thought the gardening fairy did everything but er no it was moi. So whilst he likes everything to look neat and tidy, he’s not used to doing it all himself or how much effort is required. So much so he is thinking of going back to work as I keep him too busy doing jobs he doesn’t like. I’m not sure how I feel about this but hey ho given up now. More me time for me so that’s not all bad.

Tonight I have house guests. My two nephews are staying overnight so we are going to watch Beauty & The Beast. They are 8 now and no trouble. Just made them food and they are so fussy! So 4 different teas tonight which is ridiculous and not something I would put up with long term! Quiche for me, plain and simple. Beef casserole and mash for Joshua, home made which he said was ok 😦, nuggets and chips for fussy-pants Joseph and jacket potato and quiche for his lordship lol. All finished off with ginger sticky toffee pudding which was lovely. I am not sure I could cope on TPN, it frightens me, it all frightens me.

So peeps that’s all for now, we can have good days with a fistula and this is one of them. Experience tells me it doesn’t last – I think the cavity empties and I feel better but then it slowly starts to fill again as the hole or damage to the bowel wall is still there. So I have to learn to enjoy the good days whilst they last.

And life rumbles on…….

So Christmas is now a distant memory and I can’t say I’m sorry.

January is half way through and how’s it been ? Well still very up and down which I suppose is normal for me but something I find hard to accept and adapt to. Good days give me a reminder of how life used to be but it never lasts and leaves me feeling very sad. When I was first diagnosed with bowel disease 32 years ago, it was hell and I was ill all the time. I was on loads of medication plus steroids and it was a real struggle especially with a 2 year old to look after. But I seemed to cope better then than I do now despite the good days I now have. I think it’s because of the circumstances as to how I became ‘ill’ again, a routine op going wrong and leaving me with more problems than I ever envisaged. Plus of course I’m older and, like most of us, picked up quite a few knocks on this bumpy ride called life.

For new readers I have an enterocutaneous fistula. This means there is a connection between my bowel (entero) and my skin (cutaneous), also known as a catastrophic complication of surgery. In simple terms it is a right royal pain in the you know what. I have three small holes on my midline incision and have to wear a bag . This is of course in addition to my stoma bag which by the way is a joy compared the Devil Incarnate Fearsome Fistula. The fistula is high maintenance as the bags are prone to leakage. The fistula holes are in an awkward place and are recessed so just seep liquid which leaks through the sides of the bags. I’m in contact with all the stoma companies and they are great, very supportive. But it’s all trial and error and my postman is kept busy delivering endless bags and products, none of which have been that successful in all honesty. It does get me down and reduced me to tears when I have spent ages carefully applying the bag plus products only to kind it’s leaked a few hours later. Plus of course it’s not just the leaks, I could just about live with that. It’s the uncertainty of it, how I can be fine one day and in hospital the rest, how I’m dependant on painkillers now to get through the days. But this is how it is and I don’t have much choice, I just have to deal with it.

One of my fellow bloggers mentioned ‘stuckness’ and oh how I can relate to that. I’m completely lacking in motivation to change anything as there are a few things I could do to make life better for example lose weight as apart from the obvious health benefits, maybe the bags would stick better on a slimmer abdomen. Plus exercise as I do very little bordering on none. Both of these goals are essential for me really as I’m so unfit at the moment and even if I don’t have any more surgery, the fitter my body is the better I fight the constant pressure a fistula puts on my body. But again it’s hard to step out of my comfort zone, my retreat where I feel safe and cosy despite a rather turbulent relationship with my husband. He is fit and well and very very bored but that’s already been said. My life is busy enough for me, with us having our little granddaughter 2 afternoons a week, plus all the usual household chores. Not a very exciting life but I’ve had enough excitement for one lifetime, I now want quiet but he doesn’t , well not all the time. If I recovered or at least had some stability, I think I would higher the bar a bit and become more adventurous but for now, I need a simple quiet life. So we compromise and sometimes do separate things which is not normal for us but is working out ok 👍👍 I think we all need our own space occasionally . I have suggested a Man Shed but he hasn’t taken much interest 😫 maybe it was because of the suggested location – the moon ………😊

Tomorrow is doctor day. I see my GP in the afternoon for my blood test results then make the trek to Cardiff to see my consultant. Not sure what I will say to him as I know as long as I am –

Vertical

Breathing

Not losing weight

I’m stuck with it. As he knows and I know surgery is NOT the answer, especially not yet, there is no answer it seems. He can’t give me medication as there is no obvious underlying disease. Even though I feel as if I’m fighting a constant low level infection, my white blood count is ok so seemingly my body is fighting it. What frustrates me is you’d think seeing as he is a Professor, he would want to find out what has caused this yet he doesn’t seem to be looking very deeply. Of course that is probably a highly inaccurate assumption as I have no idea what research he has done into my case. Unfortunately owing to my ‘high anxiety’, he doesn’t tell me everything which is not always helpful. I need to impress upon him that a) I am only highly anxious because of what happened and the fact I have this demon within me & b) if he doesn’t tell me, I ask Dr Google which usually results in even more anxiety as Dr Google inevitably predicts certain death within the next 3 weeks. Sometimes it is far better to be ignorant and not have the personality that digs deeper than is recommended but I am what I am. On saying that without my Consultant, I don’t think I would have survived this far, he grounds me and puts things into perspective. He is very calming – the only time I saw fear and slight panic in his eyes was when I was in ICU with lungs that had failed, but that is understandable.

Once tomorrow is over, we are celebrating our beautiful granddaughters birthday on Friday and again on Saturday when I am one of the Nana bears in the Teddy Bears Tea Party. So on that note I will finish as I need to be somewhere else doing all things party related.

Easy for Audrey Hepburn who was beautiful and talented but I know what she means,. I’m ok, I’m kind and I do my best which is good enough for me , for now 💕

Well that’s done and dusted………

So Christmas 2017 has been and gone. It was a stressful run up. I woke up in the early hours of the 21st with stomach pains and severe diahorrea which despite all my ongoing problems, is unusual. This continued all night until 8am when I passed out on the bathroom floor. Stephen had been out the night before on a Christmas bash and was oblivious to the fact I’d been ill all night. He eventually found me and an ambulance was called. The problem is with my history is no chances are taken and I ended up in a&e, hooked up to a drip, blood taken, x ray’d and monitored constantly. I slept all day and they decided I had Gastroenteritis and the reason for the collapse was dehydration. They said owing to my very complex history they wanted to keep me in but by 7pm had changed their minds and discharged me. By 9 pm my temperature had shot up to 38.5 and so stephen then spent another hour on the phone to out of hours doctor ……..

I was ok the next day but still had cramps. Christmas wasn’t going to wait though and I had to give instructions to get everything done by the Big Day which was hanging over me like the sword of Damocles. I snapped constantly at hubby as he stressed over this and that and even he acknowledged that Christmas involved a lot of prep and organisation. He obsessed over the fact we didn’t have a cranberry topped pork pie and I swore if he mentioned it once more, I would become violent towards him. He still insisted in going into town to get one which nearly drove me insane! (and at this point in time sits in the fridge unopened and possibly out of date). By Christmas Eve I felt a little better but still no where near right plus I was too scared to eat much or drink anything other than water. I started to hate sellotape,scissors and wrapping paper as I struggled to get everything done, I was so grumpy I was scared of myself! I had all the family here for a buffet I couldn’t eat whilst the children opened their Christmas Eve boxes, which was a big success. Christmas Day dawned and I was relieved to find I was still reasonably ok so the day unfolded and we went out for lunch as planned to Lyndsey’s future in laws. I risked a small dinner and was ok. Boxing Day meant another family gathering here and by now I was getting tired and just longed for a pj day but needs must. Lyndsey was up to her neck in toys and a hyper toddler and my sister does not do any form of hosting. So there is only me, and it went ok with everyone leaving about 8pm when I risked a port which I enjoyed.

So it’s been and gone and I can’t say I’m sorry. As I’ve said before I don’t seem to fit in my life anymore, I’m no good being the one who is always ill . I sometimes feel angry at the surgeons for making things so bad for me and expecting me to just carry on as before when everything absolutely everything has changed. The way the doctors normalise things by saying how well I look, I’m having more good days than bad, how things could be so much worse. Well I know all of that but they could be so much better had they not talked me into that fateful op which has stolen so much from me.

But il keep on hoping il find my place again. I have some special people in my life who keep me going and make it worthwhile and who knows perhaps 2018 will find me my Happy again xx

Christmas wishes……….

Well the big day is nearly here and I’m looking forward in a ‘glad when it’s over ‘ sort of way. Not meaning to sound like The Grinch you understand, but I think all of us with chronic illnesses will understand the added pressures and expectations that Christmas brings.

My husband loves Christmas and I am expected to follow suit. So presents are packed and fridge is filling up nicely but as usual I’m very nervous about my health. If you’ve been following my blog, or if you are a fellow fistula sufferer (God Bless you), you will know how unpredictable life with a fistula is. I saw my consultant last week and as usual he was lovely. My circumstances are not normal, he says himself that I’m almost too well to have a fistula, as most people who have them are ill and I’m not particularly. But I remonstrated that I may be well in his eyes but compared to how I was before, I’m nothing. I’m broken and sad, I hate feeling under par all the time with little energy and even less zest for life. He said he understands that and it’s all about acceptance which I struggle with. He is right of course I do struggle. I’ve had health problems all my adult life thanks to severe endometriosis and bowel disease. My 50s was to be my panacea when the menopause would kill off all the endometriosis and my health would be much better. So to have an op against my better judgement go seriously wrong is a bitter pill to swallow. Whats made me more depressed this week is finding out the suspect mass that necessitated the fateful op has actually been there for 30 years so could probably have safely stayed there. I did tell them I suspected it had always been there but I don’t think they believed me and in this litigious society we now live, they couldn’t take a chance. How different life would be had I not had that op. But then again they have said the mass was strangulating my bowel and anything could have happened. Who knows, I certainly don’t….

But the past is gone and there is nothing I can do about that, the future isn’t promised, we all just have today, that’s all we really have so I have to learn to live in the present, taking each step as it comes. I agree that part of my problem is I’m so traumatised by what happened, that half the time I’m fearful of what may happen not what actually is happening. Plus my husband constantly wanting his wife back, the old me, he struggles with the new me, I’m always unwell, forget things, get tired very easily, don’t cook or eat normally, hate going out……the list is endless. It bores him I know that. He wants us to be going on those world cruises we promised ourselves but as I tell him he could be visiting my grave. That makes him sad, very very sad.

So what are my Christmas Wishes. Well first and foremost good health as without that everything is more difficult. Plus harmony and happiness for my family and friends. We have lots of company over Christmas which is (mostly) lovely and we have three beautiful children in our lives to share it all with which makes it all a bit more special.

So I raise a glass to you all and sincerely wish you health and happiness at Christmastime and as always, thank you for reading 🎅❤️🎅