The last post of 2016

So here we are the last post of 2016, in some ways the last year has flown by in other ways it has been a drag (endless days of head pain will do that to a girl). One thing I did learn this year, well actually I learnt quite a few things this year. One of them being that medical staff do not warn you of the laxative effect of a caffeine infusion. But enough of the toilet humour that I always manage to sink to!

 

This year I have learnt the power of friendship, that dreams can and do come true. On 26th May 2016 I published Pipe Dreams Part One http://wp.me/p4zBAs-hj  and discussed my wish to raise enough money to purchase a new wheelchair and power trike attachment so that I could go out with my husband when he walked the dogs on Woodbury Common. Never in my wildest dreams did I believe that I would achieve this just over 3 months. On September 9th 2016 I took delivery of a second hand wheelchair and Power Trike attachment which I talked about in Pipe Dreams Part two http://wp.me/p4zBAs-jD .

 

To achieve my dream hubby had his back waxed and raised well over £1,000. I am so proud of him for doing this as I have seen him both cry like a baby and swear like a trooper when having his legs waxed for BBC’s Children in Need, many moons ago. He is my hero and if you fancy watching the video’s of him being brave and getting it done you can see them here in my blog post The Things You Do For Love – http://wp.me/p4zBAs-iL

 

When I first got the Power Trike attachment I promised that there would be a video shortly something in which I have been remiss. Various things have got in the way of putting a video on line, health, getting used to driving it and on my last venture out falling out of it and hurting my back. This Christmas I decided that I would venture out with the dogs on their morning walk. So later than promised here is a short video with commentary provided by Mr Myasthenia Kid aka Mr Morris. 

 

I want to say thank you to everyone who raised the  money, Abbie Wilson who gave up her time and her beauty studio to wax Mr Myasthenia Kids back, my two fundraising helpers Sharon Ross and Imogen Clark. Without you all none of this would have been possible, thank you. I would also like to thank Emmey Lou for her invaluable help along with her husband Mike.
So this is the very last post of 2016, I feel sad that the year is over already, I feel like I need another run at it.

So I wish you all a very happy 2017, may your dreams come true, may your health improve and may you love those in your life with all your heart. See you in January 2017.

The most un-birthday-ish ever

Next Tuesday (1st November) or last Tuesday by the time you read this, is my birthday and this year I am feeling the most un-birthday-ish, I have in years. I just can’t get excited about it, nor my husband’s the following day. I have bought and wrapped all his presents, I am looking forward to giving him his presents but if we could just gloss over mine I would be more than happy.

Saying that though I have been incredibly irritated when hubby has tried to open my cards (that have arrived by post) at the same time as his. I have also banned the cards that have arrived being put up on display before the day. Hubby has a dreadful habit of opening everything on the lead up to our birthdays and this year this has got on my very last nerve. I have so little this year to look forward to, that I have decided none of my cards will be opened until the day. I have no problem with him opening the post the rest of the year but my birthday cards are just that mine.

There are a lot of things happening on the lead up to the big day, at the weekend hubby is going out with his friends, so I have a really good friend coming to spend Sunday into Monday with me. Up until now I have been pretty excited by it, we have been planning it for months but now I am filled with anxiety that she won’t enjoy herself or that I will be ill (well sicker than normal) and she will end up changing her role from great friend to carer. Something I hate because it will mean yet again chronic illness has taken over a day that should be fun.

On the 31st October I am heading to Plymouth for my caffeine infusion and meeting up with my oldest friend Sharon, who I have known since we were 8 years old. I can’t thank her enough for spending her free time with me in hospital (a place we both loathe) so that we can catch up. I am looking forward to seeing her as I haven’t seen her for about ten weeks. We have gone years and years before without seeing each other but now because I have seen her on a more regular basis, the hospital visits just aren’t the same when she isn’t there. I also have to thank her for being my photographer when I had my occipital nerve block injections back in September. She admitted to me afterwards that she had almost passed out when she saw how far the needle went in!

Maybe I have my husband to thank for me not feeling particularly birthday -ish after all the muppet did book me in for my first dentist appointment in 3 years on my birthday…..Even the receptionist questioned his wisdom at the time of him doing this. I have been quietly seething ever since as I have a rabid fear of dentists and I know my teeth are quite a mess thanks to EDS.

Most people (other than Dentists) have no clue about the damage EDS can do to the teeth. I am rapidly losing the enamel from my two front teeth, so the base of them is very thin and over the last three years bits of them have chipped off. Also the braces I wore as a teenager have left pits in my teeth, I was lucky enough to wear the old train track style braces top and bottom. Where the brace was cemented to my teeth it has left holes that rapidly became gaping pits in 2013. My dentist at the time filled the holes and they looked great for a while but now, due to copious amounts of coffee (due to my CSF leak, caffeine increases cerebrospinal fluid production) and fags (I seem to smoke more when I am in a lot of pain, when I can get out of bed to smoke at the back door) these “fillings” have become stained and I hate looking at my teeth.

I know I am going to be in for a painful session and will probably have to return quite quickly for more work. I think I need a couple of fillings too which will be an adventure as due to dysautonomia I need adrenaline free injections or I will pass out on standing. I also need a Dentist who works quickly as due to EDS affecting the local anesthetic. I tend to burn through the stuff very quickly and due to my extremely low pain threshold when it comes to my mouth (everywhere else it’s high). So as you can probably imagine I am less than thrilled with the prospect of attending one of my least favourite places on my birthday!

In my husbands defence I did say to him accept the first appointment they have…………maybe I should have given it a bit more thought.

The 1st of November would have been used by me as a crash day. Not that I book them in but I know from experience the day after the trip to Plymouth for a caffeine infusion I am fit for nothing and can barely move. The trip to Tavistock for my neurology appointment landed me in bed from the minute we returned until the Friday (28th October). I was just so tired that I couldn’t function, I kept dropping things, my eyesight was blurred and I had double vision. The pain in my legs and spine from sitting for so long meant all I could do was lie down as my normal painkillers weren’t touching it. I am expecting all of this on Tuesday along with a trip to the dentist. Wednesday 2nd November hubby’s birthday is going to be a total washout. It’s just as well hubby is on holiday that week, as my capabilities are going to be severely restricted.

I don’t know if my lack of birthday excitement is also being caused by the fact for the first time in years we won’t be holding a party. Since our 40th birthday we have held two parties a year. This year however we have had to cancel them all, as I am just no longer well enough to have 15 plus people in the house and all the stress that goes along with putting on a do. I hate what this CSF Leak has done to me. It has robbed me of everything this year and what hurts more are those who fail to understand how bloody restrictive it is.

My life is ruled by my head pain, yes on a good day if I am lucky I can have a few hours sat up. So when friends come over I deliberately lie down for hours before they arrive so that I can be sat up for their visits. However even those have become few and far between. I know that people have their own lives to lead and I don’t begrudge them of that, it’s just this year has become particularly isolating. I have to thank Imogen and Sharon for always being there for me. Imogen for coming every two weeks to see me and looking after our mutts on a moment’s notice and Sharon for accompanying me on my frequent trips to hospital. Without you both I really would have been lost this year. If anything this year has taught me a lot about friendship. There have been others too who have kept in regular contact via text and for that I am grateful.

This birthday is the 9th birthday I have faced being chronically sick. In a normal world I would have gone out for dinner and had a few drinks with my closest friends. Yet again the day will probably be spent lying on the sofa / bed wishing I was anywhere but here. Birthdays were always so exciting when growing up, now they mark another year of failing. Failing to celebrate like the rest of the human race and doing it the chronic illness way. Grabbing what pleasure you can while you can. In an ideal world I would love to go pony trekking for the day or go on a day trip or see a film or play. Those days are long gone and a birthday is now a bitter reminder of stuff I can no longer do.

I should be grateful many people aren’t lucky enough to see their 43rd birthday and I am grateful for the things I have. I just wish that it would be vastly different.

Too much of this year has been spent lying in a darkened room due to head pain, which in turn has left me with far much time to think. I am even anxious about Christmas and whether I will be well enough to supervise the cooking of our Christmas dinner. I have never worried like I am worrying at the moment as I have no control over when a bad day will happen and there are no takeaways open on Christmas day should I find myself incapacitated.

I wish I could get myself into the swing of things and look forward to this birthday but I just can’t. I haven’t felt this un-birthday-ish ever. Hopefully next week I will be able to tell you that I had a fab day….even if some of it was spent in the dentist’s chair!

My MRI

Today’s blog post will just be a quick one as it is Wednesday (tomorrow is publishing day) and for the last week I have been hammered by migraine after migraine.

They seem to have shifted now and I know that they have been caused by the stress of the situation I find myself in. Whilst the medical profession play hunt the possible tumour (benign) I find myself living in limbo, putting on a brave face for everyone around me when really I am shitting myself. I have a million “what if?” questions going around in my head and no one is able to give me any answers. 

My husband is also putting on a brave face but I know he is worried about me, he is losing his temper at the slightest provocation. He isn’t my normal hubby but someone who is struggling with his emotions. I hate the way my health problems screw him up. I feel dreadfully guilty and despite my reassurances that I am about 80% certain they will not find a tumour and the raised prolactin with be idiopathic (without a known cause) because that is the way my medical history plays, he can not help but worry. I understand that he is struggling and so am I. We struggle on together, supported by those that we love.

Last night I had my MRI scan, mine was the last one of the day at 19:10pm. I was unable to sleep the night before and ended up getting up at 1am. I did manage to have an hours nap late in the afternoon and actually felt a great deal calmer when we got to the hospital.

Everything went smoothly, the cannula for the contrast dye went in first time (practically unheard of but I know of a decent vein on the back of my right hand), I got the technician to give me a surgical glove filled with warm water to help the vein come up. The MRI itself was the longest one I have ever undergone and the platform that I was lying on was shaking with the sound of the machine as it took the images that they need. Halfway through I was injected with the contrast dye. For the next series of scans they checked I was ok and not having an allergic reaction to it. They did say that reactions to it were pretty rare but they had happened and that they were equipped to deal with it. The two staff dealing with me were exceptionally nice and made me feel relaxed which is always a bonus.

I really loath head MRI scans due to the fact your head is wedged with blocks to keep it still and then you have a plastic cage thing placed over the top which contains a mirror so that you can see the technicians doing the scan. Rarely during the MRI’s do I open my eyes, I can cope better when I have them closed. I get quite panicky when I open them. I don’t think it is claustrophobia, its more an issue with masks and things on my face. I had a major operation as a small child and I think a mask was placed on my face before they sent me off to sleep. I have had a weird reaction to certain hospital smells and stuff on my face ever since. I can’t even snorkel because having the mask over my eyes and the tube in my mouth makes me start to panic. I have no control over it, I feel like I can’t breathe (despite logically knowing I can) and I need to rip the stuff off my face and just move away from where it is taking place. Having my head strapped down, with the cage over my face provokes the same feelings.

I managed to focus myself on the music I was having played during the MRI. I went old skool with U2’s The Joshua Tree, this was the first CD I ever owned. I tried to keep control of my breathing all whilst clutching the emergency button as if my life depended on it. Over all I am pretty proud of how well I did, I was in the scanner for around 35- 45 minutes, which at the time seemed a lot longer.

The only drama we had last night was that the cannula site wouldn’t stop bleeding. We had made it from the X-ray department to the main hospital corridor when I felt something dripping down my fingers. A quick check proved my suspicions right and it was blood. It wasn’t a big deal but the gauze that I was using to apply pressure was now about as much use as a wet tissue. We headed back to the department, it was deserted as everyone was packing up to head home. We stumbled across another technician who was very helpful, giving me a great big pile of gauze and taping it onto my hand. I knew it would stop bleeding eventually and it was just more inconvenient that frightening. All that was needed was more pressure and to keep my hand up on my chest to help stop the bleeding.

We eventually got home after 9pm and I crawled into bed shortly after that. I am exhausted today and can see other than writing this post very little else happening. My results should be with my consultant in 5 days and with my gp within 20 days. Hopefully somewhere in between I shall find out if I have a tumour or not.

On a lighter note I would like to wish my mum a very happy 60th birthday. She has always been my blogs biggest supporter and I want to thank her for that. I hope you have a lovely day and I am looking forward to seeing you at the weekend. Love you xxx

Pity party for one

Before anyone suggests it, this is not a cry for attention. It’s just an expression of how I feel at the moment. Only those of you who have a chronic illness or care for someone with one will get this. The title “Pity party for one” is a complete piss take. I don’t want a pity party, I want a break from everything that is going on at the moment.

It’s difficult to come up with a blog post when all you have faced over the last few weeks is a ramping up of your joint pain and unbelievably bad health (more than normal). I don’t mind joint pain when I have partaken in activities that warrant it. That’s pay back and its normal – for me. It’s when all you have done during the day is move from your bed to the sofa and back again, it really starts sucking all the joy from your life.
I have been in tears or close to them for a few days. This new level of pain has brought me down, I have upped my dose of painkillers but it doesn’t do anything much or it takes all day before I feel any relief. When the pain is bad I am convinced I am depressed, when it eases off I know it is the joint pain that is so badly affecting my mood that I want to go to sleep and not wake up to face another day of pain. That is how bad it is getting and I have no idea why. I don’t want to die or do anything stupid. This is not a cry for help. This is the sheer level of frustration you feel when you are on a runaway pain train. You do not know how you will possibly get through the next hour let alone the other 23, only to face it again, day after day.

You get through it, you don’t know how but you do. The exhaustion leaves you feeling like a zombie and wipes out any reserves you may have had. I don’t know how my body still functions but it does. I know at some point I will get back on top of the pain. I just don’t know how or when. I am sick of waiting.

I can live with a certain level of pain. I have had to, I spent from 1999 to 2011 without medication because I couldn’t get anyone to believe how awful the pain was. I have been on top of it for a few years with the occasional flare up. This pain flare up has building for a few weeks. Its changed from the constant aching to a sharp pain that is unrelenting. I can only describe it as feeling like my knees and hips have been replaced with metal spikes. Every movement feels like the metal spike is rubbing along the bone beside it. Today every time my right foot went to the floor I wanted to cry. I hate using walking aides in the house as they are so very limiting – you can’t carry anything when you use a stick, frame or crutches. I tend to use the furniture to help me hobble around. I seriously considered using my crutches, for me to even say that out loud means I am in a considerable amount of pain.

However I am conscious that I need to keep moving. One of the things you do when you are in pain is limit your movement, its only natural to stop doing something that hurts. With EDS we need to keep moving as much as we can, as not using a joint could mean in the long-term more problems. It’s hard to keep that in your head when you want to scream every time you put your foot to the floor.

I am not looking for sympathy, I am just giving you a peek into my life. Its the bits no one sees because I wont let them.  I hate feeling this miserable, I hate the pity party I am currently throwing myself, it just isn’t the real me. It wears you down, exhausts you and causes you to draw into yourself rather than live in the real world. I am at times too exhausted by it all to speak.
You would never know if you saw me in person. I am good at hiding it in plain sight. I can keep a fake smile plastered on my face for a couple of hours. I can keep a light and breezy conversation going whilst my vision goes grey as my blood pressure drops. I have become so good at hiding the sick me, I sometimes doubt how ill I am myself. Then reality strikes, as on Sunday when I lost the ability to urinate again. Thankfully for some reason I could place the catheter when all attempts on previous days had failed. Its only when bits of me stop working properly that I have to acknowledge that life is not normal. I am left asking myself how did I get here? What happened in 2007 to change the course of my life so dramatically? I have no answers.

The only person that ever sees my struggle is my husband. I would be lost without him. He is the only thing that keeps me going at the moment, well him, the dogs, my parents, my sister and her family. I am struggling underneath the weight of this pain. If I could just get some relief just for a few hours I would feel like me again. I wouldn’t have to wear this mask that I hide behind for fear of people seeing how weak and vulnerable I am.

I am sorry if this post seems negative. It’s not meant to be, it’s a picture of what life can be like when you are chronically sick and trapped within your house because the pain and stimulation of the world outside is just too much for you. I rarely feel as low as I have for the last few days. I know at some point I will catch a break and I will feel better – better than I do right now. It will happen, it always does, that is what I cling too. 

“This too shall pass”

Dear 2015

This post was nearly ready to be published last week when we had the devastating news that Willow had a tumour in her breast, should the X-rays showed that it had spread, we would have to make the hard decision to let her go. Due to the intense emotional distress this caused both hubby and I, we decided together that I would skip a week of the blog until we knew what the future held, life with or without Willow.

 I am happy to report the tumour hadn’t spread and it was successfully removed. The tumour was a mixture of benign and malignant cells so from now on we will keep a close eye on her. So here it is the post I prepared before even knowing that 2015 was going to be a roller coaster.

*  *  *

Dear 2015,

I know that you are just a few days old but I wanted to give you a heads up, 2014 was a bit shit health wise if I am honest and I would sincerely like it if you would give me an easier 12 months. Although with awful PoTs symptoms starting on New Years Eve, I think its clear what your evil intentions are.
2014 was going swimmingly until I had a glucose loading tilt table test to confirm the diagnosis of postprandial hypotension in February. However it also changed my diagnosis from PoTs to severe Autonomic Dysfunction making my diagnosis even harder to explain to the myriad of medical professionals I would encounter during the remainder of the year.
Following the TTT my health took a massive decline. Just five days after the tilt table test (TTT – for short) I was bed bound and hooked up to my oxygen concentrator 24 hours a day for a week. I was inducing stress levels in my husband that I didn’t think were possible to survive without provoking a heart attack. No one had any answers, all my gp could suggest was going back onto fludrocortisone (florinef for you in the USA) and increasing my fluids. My hospital consultant was on holiday, so my gp and I were winging it. As always my main aim is to stay out of hospital because dealing with idiots when I am unwell drives me nuts, even well-meaning idiots. When I say idiots I mean the ones that although well-meaning presume they are experts in my condition after 5 minutes on google.
Thankfully that time I avoided a hospital stay, the next admission in April 2014 was planned. This was for a trial of the drug Octreotide to see if I could tolerate it and if it prevented my postprandial episodes as I refer to them as. The drug worked but the whole trial was farcical, with me being discharged after only injecting the drug once myself and arguing continually with the nursing staff who kept trying to give me the drug hours before meal times which as I later found out due to my own mistakes would have produced horrendous hypoglycemic attacks. I was also discharged with very little information and with my gp having no way of ordering the syringes or needles I needed to inject the drug because they weren’t available on the pharmacy list which gp’s can order from. This took several months to rectify, oh and I have failed to mention that I had no information regarding the disposal of the sharps bin either. As I said farcical.
May and June 2014 saw repeated bouts of cellulitis and I was very lucky not to need I.V antibiotics to sort it out. I had blood tests and antibiotics coming out of my ears but no cause for these repeated infections was ever found. I am just lucky I guess. I had no appreciation before hand how ill cellulitis can make you feel. The first bout started with what we presume was a spider bite on my knee, the second bout started after I had a manicure and the third and fourth bouts happened after I was bitten repeatedly by mosquito’s. I was very poorly but as always I chose to ignore it as I have found burying my head in the sand always works well. Spot the lie.
The end of June was equally dramatic with Acute Urinary Retention occurring on the 20th June resulting in me being admitted to hospital on the 21st June with a blocked catheter. If I thought I had lost my dignity when having a smear test (PAP test in the USA) in the past I was in for a rude awakening when having catheters fitted and subsequently removed. By the time a catheter becomes necessary you no longer care what it will take to relieve the agony of an overly full bladder. I have very little recollection of these events and I kind of understand women who say they forget the indignity and pain of childbirth. I think I have blocked the memories from my mind. Only to be remembered when I read the blog posts these incidents are contained within.
So six months in and 2014 had been one of the most eventful years of my professional sick persons career. So 2015 I would be grateful if you could keep the drama to a minimum. I don’t mind drama as in I have a winning lottery ticket or a National Newspaper wants me to write a regular column for them, that’s fine. I just don’t want the health drama for me or any of my loved ones. There is too much drama in the world already without adding a whole new level of shitty health problems.
The following six months weren’t remotely better, they just presented different challenges. From March onwards the back pain I had been suffering with since 1999 decided to ramp up a gear. I found out in September I have arthritis in my spine and a flattening of one of my discs. My palpitations, feeling faint etc have been worse for the last six months which has meant me staying on the dose of 3 fludrocortisone tablets a day. The steroids help but the bring other issues such as sleep problems and constant hunger. My weight has gone up and down like a yo-yo in the last 12 months. An outsider may think “weight should be the least of your problems” and I agree it should but I am so unhappy when I can’t fit into my clothes. I can cope with my health being awful as long as I don’t put on lots of weight. My weight seems to be the final straw. With my back pain being as bad as it was I spent much of the summer in bed in vast amounts of pain. With further reduced mobility I ended up putting on weight.
One good part of 2014 was finding out the answer to why my back was painful and discovering that gentle Pilate’s could strengthen more core muscles enough to alleviate that pain. I found joy in completing the exercises and used my Pilate’s time as me time. I could relax and found myself feeling calmer…..until my knees really started to hurt. I think the strengthened core muscles changed my gait which then altered the pressure on my knees or maybe the pain in my back was masking the pain in my knees. It doesn’t matter because in December 2014 I could add early onset arthritis in my right knee and  possibly all of my fingers.
December 2014 was eventful due to another bout of Acute Urinary Retention and a urinary tract infection to boot. So again 2015 I beg of you don’t meddle on the health front please. The last 12 months was hard to deal with and I am no longer bouncing back like I used to. My husband really can not continually cope with this level of stress. As a result of my declining health he has now put on several stone in weight as he is a stress eater. I want him with me for a long time, so please lay off me for a while so that he feels he has some kind of control in his life.
Last year I made a huge list of New Years Resolutions, it was the first time I had done so for many years. Looking back at the list I realise I didn’t accomplish any of them due to the health issues. That was a bitter pill to swallow.
One of my resolutions wasn’t affected by my health, I wanted to get back into creative writing…..I didn’t, I got back into blogging after an 18 month break. It has been one of the most rewarding things I have done. I have made a very special friend who I would never have met without my blog. I was nominated for a Wego Health Activist Blog award and I more than doubled my readership in the space of ten months. Something I am extremely proud of.
So if I maybe so bold 2015, I have provided you with my personal wish list for the next 12 months. I know you can’t cure my numerous medical conditions but you can be kind.
– I feel its time you gave me a break on the health front, just keep me ticking along with the conditions / symptoms I am used to. Don’t go throwing me any curve balls because I really don’t think I have the energy to cope with them.
– Please limit my exposure to idiots in the medical field. I have been worn down by the constant exposure to them last year. Let someone else have them for a change or just educate them a bit better before you release them on the general public. I can’t be the one to educate them all the time.
– Before one of my well-meaning acquaintances sends me the link to a blog where someone cured their PoTs through adopting a sugar-free, Vegan diet may you give them a change of heart or make their Internet connection go down until they decide I have probably already seen it several times.
– If they do send it let me receive it far more graciously than I did in 2014 but then again maybe not a little sarcasm never hurt anyone.
– If I do go into Acute Urinary Retention again can you make it on a day when I have shaved my legs and waxed my bikini line? It just makes me feel better to know that these are done if someone is going to be rummaging around in my lady parts.
– Please don’t let it be this year that my smear is due for the reasons above plus it is painful due to my retrograde cervix and dislocating my right hip when I adopted the “position” last time.
– If any insects or arachnids bite me this summer please let me avoid cellulitis and high dose antibiotics. By attack number 4 it got quite boring and the medication made me feel really nauseous.
– Please get my gp to admit fully that I have arthritis in my fingers. Seemingly them swelling up, being stiff and painful just isn’t enough proof when I already have arthritis in my spine and knee. Please stop him holding onto the belief that its my stretchy ligaments causing the problem and admit it is EDS causing early onset arthritis.
There are lots of things I could ask of you 2015 but I really don’t want to appear greedy. If you could just make it a smoother ride this year for me and my loved ones it would be greatly appreciated. I know there will always be bumps in the road so let me face them as I faced the ones in 2014, with humour and wit.

 

A weighty issue

My weight has been a major issue all my life at the age of 12 months I was placed on a diet by the health visitor because I had tripled my birth weight of 7lb 13oz. I look back at the pictures of me as a baby and I have seriously asked my mum how on earth could she take that ugly thing out in public? she laughed and said I loved you!

 

I know now that it wasn’t hunger my little body was suffering from but an excessive thirst, even as a baby I was showing signs of dysautonomia (polydipsia) but it wasn’t picked up by anyone. I was only ever tested for diabetes as a child due to my voracious thirst which of course always came back negative.

 My mum and dad have often told me that I would suck on the teats of the bottles so hard that the sides of the bottle would touch and I would create such a vacuum that the teat would disappear inside the bottle, going off like a shotgun when I finished. Having spoken to my mum today she agrees with me I wasn’t hungry it was my thirst I was trying to satisfy and to this day I am constantly thirsty.

During those childhood years I was taller than everyone else and heavier than everyone else. On occasions when I stopped growing I may have been considered a little pudgy around the middle but I was never fat / obese. However being so different from everyone else (leaving infant school with adult size 2 feet and being just under 5 foot at age 7) made me extremely body conscious and hyper critical of every square inch of my body. I was never whippet like, unlike the rest of the girls that I hung around with, I was normal but not rake thin.

 

This insecurity about my weight has followed me all through my life. I have been influenced by the media throughout my life. As a teenager I had a subscription to Vogue magazine. I remember one article quite clearly, which followed a day in the life of the supermodel Naomi Campbell. I remember at the end of the article it said something like “oops I forgot to eat today”. Forget to eat? I can tell you thats never happened in my life! How can anyone forget to eat or have so much control over what they put in their body that they don’t eat? By the way Naomi wouldnt fit in a sample size these days, such is the way the fashion industry strives for thinness.

 

By the age of 17 I had already been to weight watchers and slimming world. I think the heaviest I had ever been when I went to these classes was the top end of 10st  / 140 lbs (perfectly fine for my height of 5ft 8in well within a normal BMI). I look back at the photos of when I was a teenager, when I considered myself obese because I wore a size 14 and think what an idiot. In those days a size 12 would have been acceptable, a size 10 would have been positively dreamy but no I wore a size 14 and in my mind I was an elephant. I think of all those wasted years when I looked stunning and healthy, spent on relentless diets to achieve thinness (perfection) and I think that is what coloured my relationship with food so badly.

 

By my early twenties I had developed a little known eating disorder called “binge eating”. With binge eating you starve yourself for a day or two and then whilst you are starving yourself you plan what you are going to binge on with meticulous precision. Working in food retailing was a binge eaters heaven. All day surrounded by the food you were planning to binge on when you finally allowed yourself to eat. I dread to think how many calories I would consume during one of my binges.

 

Occasionally after a binge I would throw up, I probably made myself sick only on a handful of occasions. The problem was my gag reflex, it was pretty non- existent and sticking my fingers down my throat never produced the desired results. With hindsight I am glad that I couldn’t make myself sick  because if I could of I would have then gone on to develop bulimia. Sometimes my wonky body does me a favour.

 

Around the same time that the binge eating was going on I developed a major depression and had what can only be described as a mini breakdown. I ended up having a lot of counselling, a community psychiatrist was involved and I also had to go to the local mental health unit once a week for almost two years. It was only at the mental health unit that I revealed the issue of binge eating. Through the support of my shrink and some hard work put in by myself with strict adherence to a cognitive behavioural therapy regime, I broke the cycle.

 

I am not cured of binge eating, I will never be cured as there is some place at the back of my brain where this little devil resides. In times of stress when I haven’t been able to eat this little devil bides its time before striking. Unfortunately my husband is a binge eater too and has very little control over his demon. Living with me is pretty stressful. Hubby isn’t a drinker (although we both smoke) his stress relief is food and the more calorific it is the better. It is hard for me when I am trying to be “good” when he brings all the “naughties” into the house. When the binging stops he always apologises for buying the food but as I always say to him, no one forces me to eat the stuff. I suppose its like two drug addicts or two alcoholics living together, its not a great environment to control that addiction.

 

In 2008 I was placed on steroids for my then diagnosis of myasthenia gravis. It was the worst thing that could ever happen to me. Steroids made me ravenously hungry and in 9 months I had put on 5 stone in weight (70lbs). I was the heaviest I had ever been and was wearing size 26/ 28 clothes. I truly was the monster I had perceived myself to be at age 17. I literally couldn’t stop eating. I was so ashamed of the way I looked I hid away. Refusing visits from friends and declining visits from family. I have one picture of myself from that time and its my fat shaming picture, to remind me never ever to get to that size again.

 

I have lost all the weight I put on back in 2008, for years I was stuck at being 3 stone lighter. I was still enormous wearing a size 20/22. I felt disgusted with myself but lacked the willpower to do anything about it. I felt ugly and constantly berated myself for not looking good. All the time celebrities kept getting thinner and thinner.

 

Last year I lost 2 1/2 stone and was the thinnest I had been in years. I felt fabulous, I have though found it incredibly difficult to keep that weight off. Currently I am very limited as to what I can wear. My weight has been fluctuating wildly and I am fed up with not being in control. I have a wardrobe full of lovely size 16 clothes most of which don’t fit. I am gutted that I have let it get this bad. I know that my crazy health situation has a massive part to play in this. Food is used in our house of a way of cheering ourselves up of dealing with stress and celebrating happy events. Our whole life revolves around food.

 

My health being so bad has upset me. I am not depressed its just some days it hits me really hard how bad things have become. The ultimate humiliation was having my catheter fitted by two complete strangers. I am an intensely private person and to have these people messing about with my nether regions upset me. I know it needed to be done and I was grateful as it provided some relief however when you can’t control basic functions like urination it scares you. It also made me dreadfully unhappy for a time.

 

I now feel back in control of things although my bladder has played up (not to the extreme of the end of June), my dysautonomia has been awful during this heat and my pain levels have rocketed I am back to being happy again. Not a grinning idiot kind of happy, just the kind of happy when you can accept what’s going on in your life. Even if I am carrying a few more pounds than I would like to I am back to refusing to let my weight stop me doing things like seeing old friends.

 

I hate the fact that so much of my life has been consumed by what I look like and how much I weigh. There is so much more to me than that. I have many regrets because there are things I have put off doing or haven’t done because I didn’t look good. This madness has to stop, especially when my illness is also trying to prevent me from doing things!

 

I  do feel dreadfully sorry for teenagers these days due to the images they are bombarded with. Due to photoshopping, airbrushing etc celebrities are held up to be the ideal, a size 8 or 10 (uk sizes) is now considered obese. You have to be a size zero or now a double zero to be considered perfection. Too much emphasis is being placed on looks instead of inner beauty. It makes me angry with myself that I allow my body image to be influenced by the fakery portrayed in magazines. I am sick for goodness sake and there are more important things in life than looking like you are dying from starvation!

 

However here I am again on another diet to lose the weight I have rapidly gained due to being on another few weeks of eating junk and not being able to wear the clothes I want to. There is no helping me.

 

This too shall pass

This too shall pass

 

 

I have been repeating this quote over and over in my head since February when my health first started to decline. Its the one thing that has kept me going through a year which I can honestly say is the toughest one I have faced.


In February I took a tilt table test, this was to look at my body’s reaction when I ate or drank because I have postprandial hypotension. Before the test I had to consume 250 ml of lucozade which is just pure sugar and tastes like syrup. Once they had their base line measurements I was then tilted. According to my consultant it was the most impressive one yet. However for some reason the tilt table test triggered off my symptoms in a way no one could have expected or anticipated.


My previous tilt table test in 2011, the one that got me diagnosed with postural orthostatic tachycardia syndrome had left me bed bound for around 5 days. I had been expecting the same with the one in February. This time I was fine for a few days and the wallop! I ate my lunch and then felt my heart rate increase (which is totally normal for me) however after several hours my heart rate had not come down and I was feeling short of breath. Having been in this situation before and knowing that the local hospital would admit me but then do nothing I saw no point in panicking….just yet. I rang my gp the following day and went back on fludrocortisone.


My husband ended up taking a week off from work to look after me. To ease my symptoms I used my oxygen concentrator and ended up staying in bed for well over a week. Since then I have never got back to my pre tilt table level of health.


As those of you who read the blog regularly and follow me on facebook on my The Myasthenia Kid page will know this year I have battled cellulitis 4 times, I have been admitted to hospital because my bladder decided to stop working and I needed to be catheterised. My autonomic nervous system symptoms are still pretty awful. As I write this my head is swimming as due to the heat I am continually feeling faint and dizzy.


Putting all the dysautonomia symptoms aside (I have kind of got used to them horrific as they are) my major battle at the moment is my chronic back pain. Bad backs seem to be a family legacy. Obviously my mum is waiting for major spinal surgery (as written about in Democracy in Action part one and two), my father has also been diagnosed with back problems and needs to have steroid injections but is refusing them at the moment much to the rest of my familys (mum, sister and me) annoyance. My sister suffers with awful back pain and I have been slipping discs in my back from the age of 16.


The pain in my back and the referred pain is so bad that it is depriving me of sleep and making me feel sick. Its not massively high on the pain scale, I wouldn’t rate it much above a 5 -6/10. However it is constant there is no relief.


On a good day I have a burning sensation down my left leg and an altered sensation, my leg feels wet and my foot can feel like I am wearing a wet sock. I also suffer with iliac crest pain – it took me years to work out what this pain was. I can push through this and enjoy whatever I happen to be up to. 

 

I have whats called leg dominant back pain, which means I have very little pain in my back, most of my pain is caused by the nerves that run from my back down my legs.

 

On a bad day (and unfortunately I am now having more of these than good days) the pain is down both legs, my knees throb. My buttocks and the backs of my legs ache and burn and I have a small amount of back pain. On a very bad day the back pain is awful and any sudden movement will trigger a wave of spasms. I have also noticed that my legs will feel heavy and I feel like it takes a real effort to move them. Keeping a diary of the pain I have also noticed there is a connection between the bad pain days and decreased function of my bladder and bowel.

 

Nothing has happened so far to make it a medical emergency such as double incontinence or not being able to go completely for hours. Other than that incident at the end of June when my bladder packed up completely and I ended up with acute urinary retention. 

 

To be honest I have been living with this nerve pain in my leg since 1999 when the original back injury occurred and I never really gave it much consideration until the lyrica (pregablin) I have been prescribed stopped working and my mum found out what a terrible state her back is in. 

 

My back symptoms ramped up at the end of March and I decided to do what I always do which is ignore them. However the pain has increased to such a point now where I can no longer do so. Due to it being nerve pain my opiate pain killers have zero effect on it. Doubling the lyrica dose at night worked for a month or so but I have now had to double that dose and double my morning dose. 

 

My back has got so bad that I am unable to do the things that I want to do. Combining the dysautonomia and the back issue I am no longer able to complete the small tasks around the house that I have always done. Things are starting to build up and get on top of me. 

 

On Friday I realised that I can’t do this anymore and had to ask for help. So I now have a cleaning lady who will be coming for 2 hours a week to help me keep things straight. I can’t keep on asking my husband to do more and more as its just not fair on him to be working full time looking after me and the dogs and then expecting him to do a massive clean as well. At least this way his days off will be spent spending time with me instead of impersonating Mrs Mop.

 

I find it hilarious that I am so house proud now, before I got sick I didn’t do housework unless someone was coming to visit. I was working full time and we were always going out somewhere cleaning seemed like a real drag. Let me be clear my house was never like something off hoarders but it was dusty and things weren’t always put away. Sheets and towels were always washed once a week its just what I call the finer detail was never attended to. 

 

 

One of my fondest memories is my mum coming to visit me in my flat and her saying “you don’t iron your sheets then?” I replied “when I don’t work full time it will be top of my list”. I will be honest ironing my bedding has never made it onto my list of things to do even though I no longer work. To me ironing bedding is as pointless as ironing underwear, life is just too short (and obviously I am physically unable to be stood at an ironing board long enough to iron 2 sets of king size bedding!).

 

As I say my house could never have been described as something out of Hoarders (one of my favourite shows that I like to watch and feel smug. I do know these people have a mental illness before anyone decides to give me a piece of their mind!). It was dusty and well lived in. I had a friend once come over and write clean me on the dust on the TV screen. So I wasn’t exactly on top of the cleaning back then. Plus hubby wasn’t into it too much either having the old fashioned impression that housework was my job. Thank goodness that outdated attitude of his has now gone. I always find it amazing when I look back and see how much both of us have changed from before I got sick.

 

 

 My attitude to cleaning changed when I was at home 24/7 I wasn’t prepared to sit in a mess all day everyday. Over the years I have become obsessively house proud which in turn has made hubby more so too. I am guessing some of the reason for my obsessive attitude towards keeping the house tidy was that I didn’t think it was fair on hubby to be working all day and coming back to a mess. It was all about what I could contribute to our relationship now I wasn’t working. Despite the fact that I would suffer enormously trying to keep on top of things I still felt that being at home all day meant I was responsible for everything in the home. It was never something that my husband demanded or expected it was an unrealistic expectation I placed upon myself. He didn’t care if things weren’t done as he would sort them out when he had the time. 

 

I always felt things had to be perfect. I am guessing that controlling my environment was a way of having some control in my life. I cant control my illness or how I will be feeling hour by hour, so by controlling how our home looked soothed me psychologically. Now I can no longer do this it troubles me and makes me feel guilty as I am yet again contributing less to our relationship. My mantra “this too shall pass” is continually on my mind.

 

Hubby actually told the cleaning lady she won’t have much to do. I beg to differ, hubby still doesn’t see the finer detail and I am fed up with the battle of getting him to hoover the stair carpet and the bedrooms. At least this way I know that they will be getting done and without argument!

 

It was a very bittersweet moment when I realised that I could no longer manage the little household chores that I had completed to ensure we kept on top of things. I am sure if we didn’t have the three dogs there wouldn’t be as much mess but as I could never part from them admitting I needed help was the only solution. It does compound the sense of failure I feel. I am unable to work and now I am unable to keep the house tidy. It makes me ask myself what can I do other than just survive at the moment. I will admit I shed a few tears over this decision.

 

Its going to be very strange for me having our cleaner in the house doing the jobs I used to do (and more). I am already getting anxious about it, what if the dogs scare her – they can be quite noisy on first meeting people, what if she thinks our house is really dirty, should I clean before she arrives? Its all down to a fear of being judged. She has already text me to reassure me that its ok to ask for help. It doesn’t stop the anxiety though, if there is something to worry about I will find it.

 

So here I am the day before my cleaning lady starts trying to distract myself from the anxiety that I am feeling. I have to create a list of the jobs I want done tomorrow…..which I still haven’t started because I feel guilty that I need help.

 

I know that “This too shall pass” however I am beginning to wonder when this year from hell will end. I have never been one to wish the year away but this year is one that I wish would just go. I want a do over and get back to how things were.