What to do?

What to do?

Recently I’ve been going to London. A LOT. Not for fun, but because of a neck problem I have which could eventually lead me to quadriplegia or stroke. Currently it’s just leading me to pain, exhaustion and lots of scary neurological symptoms: twitching, juddering, slurring, losing grip, extreme brain fog and my legs going from under me as and when they see fit. I also often walk/stumble like a drunken robot who’s pooped my pants on regular occasions. It’s a great look! Other times I look completely normal on the outside aside from my collar and the flicker of pain behind my smile. More and more I’m having to spend my days in bed, missing out on my children’s lives and feeling like all the previous progress I’d made in my life was for nothing.

My bed. My prison. My life.

Because my condition is a complication of another rare condition I have (EDS), worsened exponentially by an accident I had whilst on holiday with my children, the NHS are not willing to cover the very specialised tests and treatment in order to help me. This includes an upright MRI, specialist Rheumatologist opinion, specialist physiotherapy, likely more tests and eventually fusion of my spine.

I began begging my local NHS funding panel for my scan in early October. By the twentieth they had flat out refused. Even with heaps of medical studies explaining that my issues would only show up on an upright MRI, they simply stated a supine one would do. I requested a reconsideration. Sent in more evidence, even a letter from my GP stating how much I needed the scan. Rather than writing to one of the several doctors and specialists who had advised me and were well versed in my condition, they asked my neurologist for more information. My neurologist who had already stated he only knew about this condition at all because of the information I presented him with. I feel they purposely did this to slow time and make excuses not to help.

Meanwhile I fundraised. I held bake sales and tombolas. A fundraising night. I received help from local singing group New Visions and Bentley Baptist Church, even though I’m not a member! I did everything I could think of and drove myself into the ground doing so. This is why I haven’t been blogging. My body is literally broken and falling apart. I’m exhausted. Friendships have been neglected. My life has been fundraise, make calls, get carried to bed if I’m not already there. But eventually we made it! We got enough money together for my scans and the doctors appointment needed.

One of the scan images, highlighting just some of the issues with my neck.

I finally found out I wasn’t crazy! I have all sorts of issues with my neck and the doctor I saw was incredibly understanding about it. Even trying to come up with a plan of action for me. Unfortunately, that plan was all private. Apparently the NHS just doesn’t have the resources I need. Particularly the specialist physios.

Thanks to the wonderful generosity of the Bentley Baptist Church community I have been able to attend two physio appointments already. The initial one was £196 and subsequent ones are £128. Add on travel for me and a carer, plus a one night stay (in the cheapest accommodation I can find, see below picture) so I can recover from the journey, each trip is costing over £200. I use my own funds to top things up and feed myself, use the tube etc; meaning I now have enough funds left to take one more trip to see my physio. I’m also going to be fitted with a hard aspen vista neck brace on this visit which is being kindly donated to me by a wonderful member of the church who is no longer in need of it.

The quality hovels, I mean hotels, we have used to keep costs down.

After this visit though, my funds run out. I had planned to pop up another fundraising page on Facebook. Also, to do another fundraiser at the Library. But I’m so ill I don’t know how I’ll manage to prepare and attend it. Especially just over a week after my physio in London. Each trip is taking me longer and longer to recover from.

Moreover, I’ve had someone harassing me over the weekend. Despite the fact I’ve posted my hospital letters and reports. Even offered to show invoices to anyone who wants to see. They believe me to be a beggar and a scammer.

I believe it’s must be someone I know, or someone who has had a VERY good snoop into my life. But they’ve hidden their name and commented on my blog, (see Dear Mother post: no I do not think it’s her) my blog I’ve not been well enough to write since September. Apparently my children shouldn’t have had Christmas presents. I shouldn’t be going on a free, once in a lifetime holiday with them; after our years of stress and turmoil. I’m a liar and because I have family who can do that for us then there’s no way I’m ‘poor’. What does my families financial situation have to do with my own? I cannot expect them to bankroll my health needs! Yes, I’ve replied to each comment. But not because I’m a cheat or a scammer. Just because I’m sick of this ableist point of view. The idea that people who are ill or disabled do not deserve a life. We don’t work, so happiness should not be on the table for us. Going out to the park or with our families is wrong, despite the amount of effort it takes and pain it causes. Because we should remain out of sight and out of mind.

Life is difficult enough without me grabbing the slightly better days with both hands and holding on with dear life. It kills me when I’m up more and do more. But I love it. Because I’m living rather than just exhausting for a while.

So now I’m at a loss. Do I make this physio my last and just try my best to cope with the collar? Do I fight on? Do I still set up my fundraising page and open myself up to more abuse and stress that I just don’t need? Do I run myself further into the ground organising more fundraisers I just don’t have the energy to do justice?

I don’t know. I just do not know what’s for the best anymore.

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My Stoma Story… Surgery Day, Part One. 

My Stoma Story… Surgery Day, Part One. 

Mornings are always early in hospital. No matter how terribly you sleep the noise and light always seep into your dreams and rouse you from the tiny abandon you’re clinging to. The morning of my surgery was no different. Even though it was well past four when I eventually switched off and drifted into oblivion, I was awake and anxious before the hour hand was barely scraping by six. Today was shaping up to be one of the longest of my life. 

The words of disgust I’d heard the day previously weighed heavy on my mind, whilst the bowel prep still weighed heavy on my digestive system. Despite having nothing to eat since lunch and my drinks stopped in the night, that liquid dynamite was still wreaking havoc on my insides; helped along by my hyperactive nerves. You couldn’t tell by looking at me but I was practically catatonic. Making pathetic small talk one minute and crying the next, seconds ticked by like hours. I swear the sands of time slowed that morning. 


I called my husband to try and take my mind off the sight and smells of breakfast wafting my way. (Food always smells so great when you can’t have any doesn’t it?!) He promised he’d be with me as soon as possible; but with the school run and a toddler to attend to, it would be last eleven when he finally arrived. In the meantime I waited. I worried. I pestered the nurses. I worried some more. 

It was around nine when the anaesthetist arrived at my bedside. He seemed like a nice guy. Down to earth, approachable. He told me how he would numb my pain with nerve blocks and I told him about all the different pain killers and ways of administering them that don’t work on me. He politely dismissed all of what I said, confident that his approach would be nothing like everyone else’s. Desperate to believe him, I nodded and agreed. The surgeon arrived whilst the anaesthetist was still at my bedside, they shared pleasantries as I milked over the similarities between doctors and buses. It’s always the same, you wait forever for one then a whole load turn up at once.. 

Meeting my surgeon was somewhat of a relief, if only a minor one. I had started to believe I’d never lay eyes on the guy! In my imagination he was some eccentric old surgeon with a scalpel and a glint in his eye. In real life he was just an ordinary man. So ordinary his face is hazy from the fog of memory. I probably couldn’t pick him out of a lineup. 

He was the man who would change my life forever and I wouldn’t even recognise him if I bumped into him. 

What I do remember of him was that he listened. He seemed to take in what I said and genuinely try to assuage my worries. I babbled on about my recent struggles, the extreme increase in my pain and the fear that had brought with it and begged him to check over my bowel before closing me up. He assured me he would and I believed him. For a brief moment my fears were sated; until he shook my hand and disappeared from view. My calm disappeared with him, only to return in part when my husband arrived. 

The hours he was there I felt stronger. More able to cope. My husband and I bicker and argue, we are both stubborn and dig our heals in. But we also share a love unlike one I’ve ever known before. He is my best friend, my safe place, my home. With him beside me I feel like I can get through anything. He calms me and gives me strength. We spent our time chatting, holding hands and even both trying to doze. Just being close to him helped. 

All too soon though he had to leave. I’d hoped he would see me off to surgery, but the school run waits for no man and he had a long drive back home. I bawled like a baby after he left. Not for long though, minutes later I was being wheeled down to the operating theatre to meet my fate… 

The surgery before mine had run long, they were still finishing up as I was entering the anaesthetic room. The staff inside were all really cheerful. Each one of them seemed happy and friendly. Of course it could all have been an act for me, but they seemed to be a really great team. They were kind too; within seconds of entering the chilly room I was shivering, seconds later I was handed warm blankets to make me more comfortable. As a bonus, they also halted the annoying chattering coming from my teeth! 

When I’m nervous I tend to babble. Not only that but I fall back on sarcasm and humour. Minutes before surgery to perform an ileostomy in a room full of people who were about to see me butt naked and sliced open on a table I was most definitely nervous! Thanks to that days rota being shuffled I’d somehow ended up with two top anaesthetists and their teams in my surgery, so the room was pretty crowded. My nerves peaked and out of my mouth came what was practically a stand up comedians set. I can’t for the life of me remember what I was saying, but I remember laughter. My own and the six or seven people surrounding me. Fleetingly, as the anaesthetic took hold and my eyes drifted closed I thought to myself… 

If the worst happens and I don’t wake up, at least I went down laughing. 

*Watch out for the next instalment to find out what happened in the aftermath of my surgery and subsequent adjustment to life as a #baglady. 

My Stoma Story.. My First Night in Hospital. 

My Stoma Story.. My First Night in Hospital. 

I had hoped to update regularly whilst in hospital. Unfortunately the signal on the wards where I was staying was absolutely terrible; so that wasn’t possible. I couldn’t even FaceTime my kids regularly. Instead I took lots of pictures to document my stay, now I finally feel up to sharing My Stoma Story with you via a series of blogs; starting with my first night in hospital… 

Day 1: 13.6.17.

Rather than turning up the morning of my operation, as I did with my hysterectomy, it was decided at my pre op I should arrive at hospital the day before my surgery. Due to my health issues my surgeon and I thought it best I do a bowel prep in order to clear me out ready for life with a stoma. As horrible as that was, I’m so glad I did it and I’d recommend anyone else take the same approach. Clearing out meant I could concentrate on getting used to my new stoma without having the pain and difficulty of getting any remaining stool out of my colon. It was this clearout, and my need to remain hydrated throughout (thank you POTS) that landed me in hospital a day early. 

I’m not going to lie, I arrived at the hospital completely terrified. But that calmed as soon as I was on the ward and settled. The nurses were friendly and the other ladies in my room seemed really nice. There was four of us and we chatted most of the afternoon away. My husband and son stayed to settle me in before leaving for the school run, it was then the serious business of preparing for my operation began. 


First off the stoma nurse arrived, she drew two ominous black dots on my bloated stomach. One of these would become my new stoma, we wouldn’t know which until after surgery. It suddenly dawned on me that after the surgery my stomach would never be the same again. It’s strange to look down on your stomach and know that in less than 24 hours your entire anatomy will work in a completely different way. That this relatively ‘simple’ surgery would change your life drastically. I looked down at those dots for a long time, contemplating the journey ahead. Little did I realise quite how much things would change. 

Marks are put on both sides of the abdomen in case internal scarring prevents the bowel from being pulled through to the surface in one particular spot. The same part of the bowel will be pulled through regardless of which side it comes out at. 

Even though these marks just look quite haphazard, they’re actually pretty carefully placed. The nurse had me sat down and stood up, I also wore my favourite jeans in order to try and avoid their wasteband. The nurse will try her best to mark the surgery site so it is easy to access whilst being comfortable with your usual wardrobe. Obviously placement can never be guaranteed though, it all depends on what the doctor finds inside. 


To try and take my mind off the daunting task ahead of me I arrived at hospital with a bundle of goodies. My friend had kindly bought me a colouring book and pencils, I’d also filled my iPad with all the remotely interesting free books I could find. But most importantly I had a plastic cup which had been lovingly decorated by my daughter. Not only the cup, but the box too. Love hearts, kisses and words of love adorned each side of the box. I read them over and over, reminding myself constantly of the people who I was truly doing this for. 

Of course I wanted to feel better in myself. But it was my need to be more involved and present for my little family that really drove me to have this operation. My husband and children are my world and I want to be as well as possible for them. 


Lunch arrived at around twelve thirty. My nerves were running riot and the meal they offered me did not appeal. I couldn’t even force down this soggy short bread and ice cream. Luckily I still had a pastry left over from breakfast which was just tasty enough to be worth feeling nauseous for. If only I’d known that within minutes of my meal I’d have my cannula placed and be told I was no longer allowed anything solid; I may have thought differently about my lunch! 



Two hours later and it was time to start the dreaded Picolax. For anyone who hasn’t tried it, this stuff is basically liquid dynamite! Created to clear out the bowel quickly and efficiently, most people choose to sit as close to a toilet as possible when they take it! The nurses on the ward, and some of the patients, looked at me with pity as I struggled to gulp down the putrid mix. To me there is little on this planet that tastes worse than Picolax, I literally feel it hitting my stomach and starting to pummel its way through my bowel. Keeping this stuff down is definitely not the easiest task for me! 

Soon those looks of pity turned into confusion. Why wasn’t I running to the toilet? An hour passed. Then two. Three. Four. It was almost five hours before the Picolax had ANY effect. Even then it was not the bowl shattering poonami they were expecting. ‘Luckily’ they had more Picolax for me to drink.  By round two I was exhausted and looking nine months pregnant. My POTS meds had worn off and I was walking like a weird chicken zombie hybrid. This was turning into a long night. 

As I speed shudder shuffled to the loo for the umpteenth time the lady from the bed opposite me chimed up, ‘You know I couldn’t understand why you called your husband your carer when you arrived. But looking at you know I completely get it.’ Thanks. For anyone thinking of pointing out my inadequacies in future, regardless of motive, please don’t. 

The night wore on; even with my earplugs, cushion and sleep mask, I was in no way able to sleep. Yet it wasn’t my stomach tying  itself in knots or the possibility of a river of molten lava spewing forth from my nether regions without warning that was the issue; unfortunately I’m pretty used to those symptoms. No, the issue was my nerves over my impending operation, aggravated by a series of conversations I had had throughout the evening with my bedfellows. 

You see, the lady opposite me had stomas. Stomas which she didn’t exactly love. In fact, she believes many of her current health issues relate back to her previous stoma surgeries. (Due to my preoccupation with my own problems, hunger and exhaustion, I didn’t fully understand the timeline of her declining health. However, it did seem to me that her main issues pre dated the stomas.) Though I felt sad for her that she held so much resentment and mistrust towards doctors, I tried hard not to let her experiences colour my own. 

What I did find upsetting was when she bragged about chastising another patient for having her ostomy bag on show. Telling all of us in earshot how disgusting it was and how she feels the new movement to try and normalise stomas just encourages people to stare. Which they will, because it’s weird and disgusting. 

Her words really shook me. To the point I closed my curtains and sobbed silently to myself. Totally oblivious the woman carried on talking about how gross it was of anyone to see a bag, even with a cover on. We should all respect others and keep it hidden! Another patient popped her head around the curtain and sat with me a while. She had seen my upset, and even though she wasn’t quite sure what a stoma was, she wanted to help. ‘Ignore her’, she said. ‘It’s her age, she’s a prude, people won’t really think like that.’ I nodded in agreement. Wiped my tears and told her I was fine. 

But I wasn’t fine. 

The very next day I’d be having surgery to have one of those ‘disgusting’ bags. I knew that thanks to my issues with pain relief I wouldn’t be able to stand anything over my tummy, my bag would be on show. My see through bag that was surely much worse than a regular fabric covered one. Would she be on my ward then? Would she chastise me too, at a time I’m most vulnerable? My mind wandered further into the future. To my holidays and summertime. Should I hide my bag? Would a cover not be enough? Would people really stop and stare like the woman had said? She had lived it. So surely she knew? Or was she just paranoid thanks to already hating her extra appendiges? 

Question after question swirled through my mind. Worry after worry. Too tired to colour I attempted to take my mind off things with mindless games on my phone. I tried to block out the worries that crept in and gnawed at me. I tried, and I failed. 


Like with all other difficult nights I’ve lived through, the darkness eventually passed. As the sun rose I finally closed my eyes and managed to catch a few precious hours of sleep. It was then, as I closed my eyes to try and make the hours pass faster, that I vowed to myself I wouldn’t let anyone’s issues define me. Nobody else’s opinion will affect what I wear and how I live my life. In a matter of hours I would be getting operated on. An operation I was sure would improve my life. No way would I let anyone else’s negativity impact me. Yes, my nerves were still there. But now my determination had returned, for that I was stronger. 

To anyone else facing surgery and going through similar emotions as me, I say this: Fear is not a sign of weakness. To find something terrifying to the point of sobbing your heart out yet still go ahead with it is a sign of true strength, not weakness. Never beat yourself up for being afraid or upset. Just work through it and continue on your path with determination. 

To be continued… 
* Please note that my experiences in hospital may not reflect your own. I am simply documenting my journey in the hopes of spreading awareness and alleviating any fears I may be able to. 

Check back soon to hear all about surgery day and my early recovery. 

A sinking ship. 

Since having my baby in October my treatment seems to have stalled. Well, I hope it’s just stalled. Ground to a devastating halt may be a more accurate description. By now I was supposed to be back on my mess and well on the way to being ‘better’, or as close as I get. Instead I’m confined to the house, and very often to my bed. I feel like a completely useless lump. A huge burden on my husband and kids. Let me tell you, it’s not a good feeling!

The annoying thing is, I could be on the road to health. I know who I need to see and what I need them to do. There is only one problem. My GP. 

In general I’m very supportive of the medical profession. But this woman has me pulling my hair out. Quite literally. Mainly because she believes that I should be referred to my specialists one at a time. This is ridiculous. I have a multisystemic illness, it affects various different parts of my body simultaneously. To this end I need to see various different doctors for my care, including but not limited to cardiologist, neurologist, gastroenterologist, rheumatologist, gynaecologist and pain clinic. These doctors need to liaise with each other in order that treatments they give me don’t clash and so I can get the best healthcare plan. 

But no. Not according to my GP. She believes that anything above two referrals is too many. That my problems can wait. She thinks I should let one doctor ‘sort me out’ before moving on to the next. But it doesn’t work like that. Each problem affects the other. They are all intrinsically linked, entwined through me like strangle weed throughout my body.

Imagine if you will a ship. In its hull are ten holes. The navigation system is on the blink and there’s a fire in the engine room. The ship is lost at sea. You could look at the issues one at a time. The holes first? One by one. But then the blaze has taken hold. So tackle that first? Now the boat is sinking. Surely the navigation system is last priority? But your boat has drifted so far you are in dangerous waters with not enough fuel to get home. Each problem is equal to the last. What the boat really needs is a team of people, each fighting to keep it afloat. Each working independently towards a shared goal of retrieving the situation. 

I am that ship, and I’m trying to plug holes and put out fires as they come along. But I am one woman. I need my team, because right now I’m sinking. All I can hope is that I can make my GP listen and stop blocking me.