Running for Recognition – why my husband took part in a half marathon in aid of EDS UK.

Running for Recognition – why my husband took part in a half marathon in aid of EDS UK.

Today is Father’s Day here in the UK, the day where most of us choose to celebrate the men in our lives. They could be our Father, our Grandfather or a Father figure; or like me, it could be the Father to our children. My husband is not only Dad, he’s also my carer. He’s ‘chief cook and bottle washer’ in our house (a saying I heard a lot as a child) and he works incredibly hard to do his best by me and our children, all three of them.

Though my husband Karl is biologically Father to my youngest son and my stepson, in reality he is Dad to all of our children. When my daughter talks of her Daddy, she refers to him. When she tells her friends at school about her Dad, it’s him she’s talking about. She is his little girl in every way shape and form; they play fight and play pranks on each other, they watch football together and play team computer games. Soon she will be towering over him, but she will forever be his little girl.

Recently she had her EDS diagnosis reconfirmed just like me (they like to do another check a few years after the original one to see if any thing has changed) . They’ve reclassified it now, called it Hypermobility Spectrum Disorder in order to try and make Doctors less fearful of the diagnosis, but it’s the same condition. As usual Karl was by my side at her appointment, listening in to all the advice we were given so he could help as much as possible. Then, out of the blue a few weeks later he decided to sign up for the Doncaster Half Marathon in aid of EDS UK with only a week or so to prepare! Why? This is what he said when I asked…

Why did you decide to run the half marathon?

Initially I decided to run the half marathon as a challenge for myself. My whole life is devoted to looking after the family and its meant I’ve let my own interests and hobbies fall on the back burner. Recently my wife’s health has deteriorated which has left me under more pressure, this has manifested itself in depression; something very common in people who care for their loved ones. I haven’t been to the gym in years, but I thought if I could complete the run it would be a great way to kick start my journey back to a more active lifestyle. My wife now has a home care package and we should hopefully be moving to a bungalow soon, this gives us both more opportunities for independence. Don’t get me wrong, I love my wife and children; I just don’t think people realise quite how high pressure being a carer and parent is. So, when I saw this opportunity I decided to jump at it.

What made you choose EDS UK as your charity?

As soon as I signed up for the run I knew EDS UK would be the charity for me. Both my wife and daughter are afflicted by Ehlers Danlos Syndrome and its important to me that I show them both that I fully support them as best as I can. I know about the illness due to my family being so heavily affected by it, but most people have never even heard of it. Since joining support groups and learning about the condition myself I’ve realised there are thousands and thousands of people worldwide suffering in countless ways because of it. For such a widespread condition there is so little exposure, I wanted to try and do my part to help spread the word.

How do you feel about the money raised, do you feel lack of knowledge contributed to the amount of donations?

So far we have raised £75; I know it doesn’t seem a huge amount, but I only had a week to fundraise. For the time I had to prepare I’m happy with the amount I raised, after all every little helps towards finding much needed research that will eventually help people like my family and I. Obviously we all want to raise thousands of pounds, I’ve even left my fundraiser open in case anyone still chooses to donate, but with the condition being so unheard of it can be difficult to raise money. Often people assume it’s just a case of having hypermobility (as it’s also known as Hypermobility Syndrome) and don’t realise the many debilitating effects EDS can have on a person. Hopefully the more visible EDS becomes, the more people will learn and be willing to donate.

Did you get chance to raise awareness through fundraising?

I hope so. I chose to run in the EDS charity vest which is bright yellow and very eye catching. From what I could see I was the only person there wearing one, so hopefully seeing me pass by got people thinking about the condition.

In the run up to the half marathon I also shared the fundraiser all over my local Facebook and asked people in the support groups to share too. My wife also shared the link from her Facebook page which she uses to talk about all aspects of living with EDS and her other associated conditions; last week her page got two thousand hits so hopefully some people stayed to read a little of the information on there.

Due to an injury I picked up three miles in, I ran alongside two women from around eight miles; they hadn’t heard of EDS before so I told them all about it and how it affects so many people. It felt good to be able to educate someone on the condition and also kept my mind off the pain I was feeling. Hopefully they will go on to tell other people about the crazy guy who ran the half marathon on no training to raise awareness of Ehlers Danlos Syndrome. I know that I’ve raised awareness in at least two people, I’m happy with that. If each of us could educate just two people then think of how many would understand the condition better, it could be in the millions.

Do you feel the aches and injury caused by the race gave you a better insight into life with EDS?

Oh yes, most definitely. I hurt so badly for three days solid after the run. Obviously I hurt where I’d injured myself by pulling my groin, but I also hurt everywhere else. Literally everywhere, even my fingers hurt. I do feel it’s helped me relate better to the pain my wife and child feel, particularly my wife as she was diagnosed later in life so has sustained a lot of strain on her joints. Injuries and sprains in EDS are cumulative, once a joint is damaged it never gets back to how it was (or this is how we have had it explained). Because my wife was unaware of her condition she used to push through her pain and fatigue, this has left her in a state of serious chronic pain. So yes, I do feel it’s helped me understand her better when she tells me everything hurts, but I’ll never know what it’s like to be in a degree of pain all day every day. I struggle to even imagine it.

Why didn’t you give up after the injury?

I didn’t give up for several reasons. Firstly, this was a personal goal of mine and it meant a lot to me to complete it; also I wanted to give those who had been kind enough to donate their monies worth. Most of all though, I wanted to make my wife and children proud.

At around eight miles in I collapsed in pain by the road, I thought I was done and rung my wife to tell her I had failed and would be getting collected by the sweeper bus. I really believed I couldn’t go on.

My wife told me how proud her and the kids were of me, that whether I completed it or not I was a winner in their eyes. She also put the phone on speaker so my children could shout words of encouragement down the phone. This was the first time she had been alone with the children for over a year, but she reassured me they were all being great and her carer was due any minute meaning I could walk the rest of the run if needed. She encouraged me but didn’t pressure me.

The two ladies I mentioned earlier offered for me to tag along with them as they weren’t going to be rushing and running in a group is always easier. Much like when battling an illness, support is key. Thanks to the mental boost from my call home I was able to catch up with the ladies I’d met and complete the whole thirteen miles. I’m so glad I did as I wanted so badly to earn the medal and give Ehlers Danlos the exposure it deserves.

What do you think about the way doctors treat EDS? (how much knowledge they have, their willingness to treat patients with the condition?)

After seeing how my wife is treat due to her condition I know for sure that more research needs doing into the condition and the problems it causes. When my wife is taken into Hospital and has to spend her time educating almost every doctor she sees about her condition you know something isn’t right. We have travelled to London more times than I can count because there are so few specialists North of the capital. What’s even more disheartening is even when you do see a specialist in Ehlers Danlos they will more often than not refuse to treat any of the issues it causes! Often we are left feeling disappointed and hopeless. I can’t talk for other countries, but in the UK something needs to change. Even issues not linked to the EDS don’t get treatment, my wife has an aneurysm and she’s literally been told that she’s lucky it’s not in a spot that will kill her if /when it busts as due to her EDS they won’t consider surgery on it! Things need to change.

As a parent and partner how does EDS affect you?

Ehlers Danlos has completely changed my life despite me not being a sufferer. I had to give up a well paid job around four years ago in order to become my wife’s full time carer, my friendships have all but fizzled away and I’ve had to put up with a lot of negativity about not working.

Since leaving work my partners health has deteriorated. She has developed Cranio Cervical instability as well as other issues with her spine, this means she relies on me to get around and has to be laid in bed a lot. The stairs are dangerous for her as her legs go from under her without warning, so on the rare occasion she makes it downstairs I have to bare her weight over my shoulders. This is not only dangerous it’s also caused me to injure my back. Hopefully we will soon get a bungalow that will suit our needs better and my wife will get a PA, but even then I’ll be her carer. It’s unlikely I’ll get back to work and if I do it won’t be in a job with long demanding hours like before.

With my daughter I do find it tricky. She’s at an age where hormones are beginning to fly around her body and it’s hard to tell what is a hormonal meltdown and what is her body telling her she is in pain or needs to rest. Even she doesn’t recognise the signs that her body has had enough for one day yet, so it’s very hard for me to. Sometimes I don’t pick up on when she’s actually in pain, I’m trying to improve on that.

As much as I know about EDS I’ll never actually know how either of them feel as it’s not my body it’s hurting.

Will you be doing more events?

I do plan on doing more events throughout the year and will be proudly sporting my EDS vest at each one of them, though I won’t be doing another thirteen mile run on no training any time soon! Some people think I’m stupid for taking on the Half Marathon at such short notice, but I’m glad I did it as its proved to me that I can still achieve my goals. Currently I’m considering another local run through Yorkshire Wildlife Park, its a 5k run with a fun run that your children can join if they like. The entry fee goes towards the conservation of the animals at the park, including Zebras (which anyone with EDS will know are our mascot). I’ll also be raising sponsorship for EDS UK. Plus I’m on the lookout for other local events, eventually working up to doing Tough Mudder and such. I hope to get plenty of use out of my EDS vest!

Any further comments?

The only thing I want to say to anyone out there who is battling this illness is never give up. I know it’s hard; there are days my wife can barely move for pain, days where the lack of medical help gets us all down to rock bottom, but don’t give up. As long as people keep up the fight to raise both awareness and funding there’s hope that things will improve; never give up that hope.

If you would like to donate to Karl’s latest fundraiser please click HERE. I’ll update the link each time he starts a new one, so feel free to check back if the current one has finished. There’s still time to sponsor his half marathon!

All professional photographs accredited to Nullstack Ltd.

Advertisements

The Aftermath of my Appointment.

The Aftermath of my Appointment.

So, I’m here again. Trying to kick off my writing..

I have spent the last year fighting tooth and nail to get help with my neck problem. I raised money. I got it diagnosed. I saw specialist after specialist and finally I got in with one of the best neurosurgical teams in Britain at, apparently, the best hospital.

They dragged me down there for appointments, pressured me into dropping my other doctor, then discharged me with no help whatsoever.

When I say no help, I mean it. “Sorry we can’t do surgery on you” (yet admitted they would for anyone with my issues without EDS) “You’re discharged.” That’s all I got. No advice on how long to wear my collar, what collar is best, where to turn for any form of palliative care, if I’m going to degenerate further… The list goes on. I never even got to see the doctor I was referred to. Yes I did ask. I also asked all my questions. I was met with shrugs and I don’t knows.

Then the worst happened, I fell apart. I fell into a million pieces in front of both of my kids. (My specialist was in London and we had no choice but to take them due to circumstances at the time.) I saw my life stretching before me and it terrified me. It still does. I’m desperately trying to piece myself back together whilst reassuring my kids I was just overwhelmed at the doctors. I am not lying, I was overwhelmed, but the thing is I still am.

That evening, so my children didn’t have a night of listening to me sob in a hotel room, we dragged my broken body and soul to Winter Wonderland. I couldn’t walk round, so we went to the circus. My children thrilled at the spectacle in front of them and seeing them happy made me and my husband smile, at least for a little while. We took lots of photos of the pretty lights, it may seem we were there for an age. We were not. It was the circus then home. Home being a hotel room where I fell into bed in agony, an agony of my body, mind and soul. An agony unlike anything I’ve ever felt.

The next morning was back to our home, but to make the visit a little more special for the kids we took them to the Natural History Museum first.

It may seem strange, ‘claiming’ to be in so much pain but still pushing on. However, as a mother, something took over me.

A need to push the memory of me breaking down out of my children’s heads. Show them I’m ok, even though I’m far from it. I wanted to fill their minds with wonder and excitement so they were the lasting memories they brought home from the trip. Me too I guess.

Again many photos were taken. Again many smiles were seen. All were uploaded on my profile. I love to share the fleeting moments of being a ‘mum’ to my children. Most of the time I feel almost ghost like in the home. They know I’m here, but I’m never quite seen. The museum was genuinely a wonderful experience and great for access. So was Winter Wonderland (or at least the small part we saw). But inside, I was millimetres from falling apart. The whole time I was going out of my mind at the thought of a life like this, wondering how far I’d decline, how rapidly?

As the photos uploaded the likes from family and friends rolled in. They know how important these times are to me, how hard it is for me to achieve a few hours out and about. To keep that smile on my face.

Sometimes though, sometimes I wonder if I’ve gotten too good at it. Comments consisted mostly of how nice it was to see me ‘genuinely happy’. Even on the evening after my appointment where I’d originally told my husband I didn’t want to be in any pictures because I couldn’t force a smile. The evening I made sure I was too exhausted to sob myself to sleep so my children didn’t hear me. Even then I looked genuinely happy.

That scares me. It scares me because how can I reach for the help I need if people can’t see the cracks that run so deep? Why would anyone believe how bad things really are when I hide it so well? Am I hiding it for my children’s sake, so they’re not afraid, or because I can’t face it? Because if I do I’m afraid I just won’t be able to take it? Honestly I don’t know the answer. But I do know this..

I’m not the only person that does this. Many of us in the disabled /chronically ill community hide our pain. We put a veneer of smiles over our heartbreak and show that the phrase ‘you can’t polish a turd’ really isn’t true. My life had honestly gone down the toilet, but a few sparkly lights and a smile I ensured reached my eyes and all was well. I also know I’ve not been writing here because when I write I open up and a culmination of exhaustion, depression and certain events, has left me afraid to do so. But I had to write this. I had to get it out. Because I can’t fall into old traps.

The last time I hid too well behind a mask of smiles I left myself completely alone at the point in my life I was most vulnerable. I almost lost myself entirely.

I will not do that again. To those of you also hiding behind those smiles, the posed photos which hide the pain; some even making their illness worse to appear ‘normal’, I implore you to try to open up. I used to. I’m going to try to again. Not to seek attention. Not to garner sympathy. Simply to show the truth of my life. To help me accept it and hopefully find a way to come to terms with my new reality in the best way I can. This, this is the reality of that night…

Trying to hold it together as I lay full of worry in a room with my family.

Please note comments have been turned off on here due to trolls who hide behind no name, if you’d like to comment please do so on my Facebook Page @Littlelifeofmine where all posts are shared.

Who’s Watching You?

Who’s Watching You?

Hi folks. I don’t know if anyone even reads this anymore, it’s been such a long time since I wrote anything on here. Serious health decline is my excuse, but that’s not the real reason. The real reason is somewhat more personal.

You see I started getting comments on blog posts. Personal ones. Talking about my life and saying I’m faking my illness. They even commented on how often we got take away delivered to my house! This continued to escalate. So called friends and family who never actually see me as they live at a distance started with similar diatribe. How I’m always moaning but theirs clearly little wrong with me. I need to try harder. Push further. Put up and shut up.

I felt like judgement and accusations were coming at me from all angles. That I couldn’t talk about any aspect of my life anymore. If I have a good day and do something, I’m a faker. If I have a bad day and talk about it, I’m an attention seeker. I couldn’t win.. everyone was forcing down my throat that I’m a loser.

This culminated in someone reporting me for benefits fraud. Why? Because I was taken to Florida with my family and my daughter went on a slide that apparently had 216 steps. (Ironically this was on one of the days I was in and out of sleep in the hotel. Crying about the fact that even with a scooter I couldn’t keep up with the rest of the family and I was letting the kids down. Upset that I was spoiling the holiday for everyone and believing I should have stayed home. I forget which of those days she went to that water park, there were a few where my body gave out on me.) They must have overheard her talking about it and assumed I went up them too seeing as the exact number of steps were reported.

I was completely truthful. I told the lady I had been to Florida. I hoped to save up over the years and go again, at my own pace rather than trying to keep up with everyone else. So my kids don’t see me left behind. So we can do all the things we missed. So they can actually get to see the fireworks. I told her about my scooter and the lifts to any ride I did manage to go on. How my neck issues are a new development and I haven’t even reported them as I would be entitled to higher carers and that would mean they’d use the opportunity to swap me to PIP. Stress I don’t need right now. With POTS and my other problems I’m allowed on rollercoasters!

I told her how I felt watched. How I have to try my best not to wear my collar and I’m judged if I leave the house without it. I told her that if I’m having a good day I will continue to go to the park with my kids. If I can manage it I’ll take my son down the slide. I’m going to grab every opportunity to do everything I can with my children when I can, because too much of my life is either in bed or in hospital. Do you know what she said?

She said ‘Good for you!’ She told me it was clearly a malicious report and they see it a lot when people have unseen disabilities. She told me I have to ‘stuff the lot of them’ and live my life as best as I can. If I want to save and go on holidays (Not that I actually can right now, but the hope is there) do it. If I want to go to the park. Do it. Live my life as best I can and don’t apologise for it.

So this is me saying a big fat F YOU to all the people who have tried to drag me down this year; the hardest year of my life. I will keep fighting for my health, I will keep resting when I need, I will also keep going out and enjoying precious moments with my family when I can. I’m not just disabled, I’m a mother, wife, lover, friend, woman.

I’m disabled, not dead and I have as much right to living my best life as any of you! I will not apologise. I will not explain. I will continue to paint a smile on my face whenever I can. Myself, my Doctors and my husband and kids know I’m no liar. That’s enough for me.

PS. Comments will be switched off on this page from now on due to people hiding behind anonymous comments on here to give me abuse. If you would like to comment on this piece please feel free to do so on Facebook where I shall be posting it on my page: This Little Life of Mine

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.

Off to the Seaside… 

Off to the Seaside… 

Today I went to the seaside with my family. We had fish and chips. Walked the promenade. Sat by the harbour and explored down the stairs where people were crabbing. Took the kids down to play on the sand. The day was finished off with candy floss and ice creams and a drive home in the sun. It was pretty much perfect. Or at least it was to the kids, to social media.  

But that wasn’t my day. My day started with my husband telling me it was time to rise and me point blank telling him there was no chance. I needed another half hour, minimum. It started with me feeling shaken  and achey, with a temperature I’ve been unable to shift and a bag on my belly rapidly filling with fluid. You see I haven’t found that sweet spot with my output yet. My stoma is still in its infancy and I’m either sloshing out boatloads of liquid or blopping (yes I made that up) out very thick sludge. There is rarely an in between. Today was fluid. Mornings are often fluid, which doesn’t seem to help my body when trying to take my meds and hydrate. 

Fast forward to leaving and there’s me desperately using my jacket, bag and a cushion to try and prop myself up in the car. My neck and lumbar spine have been complete agony recently, to the point it’s getting a little/a lot scary. Just getting myself dressed and ready had taken so much out of me I was half an hour late with my POTS meds and hanging out of my A hole. Meds administered I peeked up about half way into the journey and started to feel hopeful for the day. The sun was shining, my family was smiling and I was just about on the right side of coping. 

Arriving at Brid we pulled up and hunted down a fish and chip place for lunch. We always start with lunch. Our days out are really only afternoons, I don’t have it in me just yet to cope with a full day of driving and walking around. Not even on a good day. The chippy was a pleasant eat in place and I could see out over the bay from where we sitting. Food didn’t take long and really was very yummy, especially the chips! They reminded me of the type we would get when I was a kid. All good so far! 


Until it wasn’t anymore. About halfway into my meal my stomach began to hurt and I felt hot. REALLY hot. I stripped off my jacket and ploughed on, its not unusual for a meal to have strange and uncomfortable effects on my temperature. But this time, things just kept escalating. As I began to feel myself shudder internally I knew I had to lie down. Immediately. 

Opposite the chippy was a set of two benches. Just about close enough that I could make it safely. I quickly told my husband and beat a hasty retreat, my toddlers screams ringing in my ear as I left. I felt guilty as sin, but I knew I couldn’t turn back and console him. Waste any time and he would likely see me fully flake for the first time in his little life. I’m not ready for that, neither is he. As I reached the bench a rather bedraggled looking man plonked his backside right in the middle of it. Luckily there was a second one. Not so luckily it was right next to a huge bin. But beggars can’t be choosers and I made the best of it. My bag under my head I laid out, ignoring the stares from strangers as I hid behind my over sized sunglasses and stared out to sea. At least the view across the harbour wasn’t half bad!


Soon enough, a little too soon for my body, my family emerged from lunch and I had to scrape myself up and slope down the incline to the promenade. The second I stood my body started screaming at me. 

Idiot!! Get back down!! What the hell are you trying to do to us?! You need to be horizontal, horizontal was working!! At least sit your ass back down somewhere, anywhere!!

I could hear this narrative through every creak and groan of my joints. The pull of each muscle and the ever increasing feeling of trying to walk through a vat of Vaseline after approximately 25 shots. That pain I was just about coping with spiked to a point where every nerve ending in my body bristled and screamed. But I tried not to show it. Just minutes from my rest on the bench I was sitting on a harbour wall. I had tried to look around a small flat museum with my family. But that was too much, so the harbour wall it was. 


I smiled and tried to enjoy the sunshine. The sun that was making me sweat buckets whilst the (apparently) refreshing breeze dumped buckets of ice across my agonised body. Outwardly I smiled whilst inwardly I writhed like a worm on a hook. Not ten yards further I was sat on another bench. Gran and I chatted whilst my husband took the kids to explore the exciting looking steps down to the sea. Covered in barnacles and going right down under the boardwalk the kids loved it, especially seeing the people who were catching crabs on a line. I sat in the sun. Missing the excitement on my little ones faces. Gran told me I should have used my wheelchair. She would have pushed me. I smiled and said I was ok.

The longest walk of all was to the entrance to the beach, past whizzing whirring fairground rides and gaggles of laughing holidaymakers. The kids forged ahead with my husband as me and Gran brought up the rear. She saw me stumbling and dragging my feet, desperately catching myself as my knees went from under me on more times than I care to remember. The children didn’t see; but my older two knew, of that I’m sure. I confided in Gran I probably shouldn’t have come, and she asked if I’d like to leave. No came my answer. I couldn’t show my kids the golden sand and glistening water and deprive them of going to play. I’d be fine. 

Gran and I had a drink whilst my husband played in the sand with the kids. Again I had to lay down, meaning I couldn’t even see them frolicking on the sand. Soaking their clothes in the salty water and not caring one jot. People stared. One young boy was so brazen that he sat less than a foot away, staring intently until I had the audacity to say hello (in my least crazy person voice). I didn’t care. I don’t care. My family is what matters to me and if laying down on a sandy wall is what’s needed to remain present for them, then that’s what I’ll do. People can stare all they like. I do however draw the line at kids purposely kicking footballs at me, of which I told them so!! 


What felt like ten million years later my husband returned with our sopping wet brood. I was less than impressed as we had no change of clothing and no towels. I’d also been laid wearing my jacket and covered over with Gran’s. Though it was sunny, in my opinion it was certainly not the weather to be going for a, fully clothed, dip in the sea. Paddle, perhaps. Drenched to the waist like my eldest son, not so much. My husband disagreed. 

That was the last bit of my barely there patience done. Rather than argue in front of the children I headed back to the car, stopping only at the loos for a quick bag empty. (Though I may as well refer to it as a pee for the amount of liquid I had in there!) At least I’d been able to use the burst of adrenaline to get me back to the vehicle in one piece. Windows down and seat back, I slowly breathed in and out trying to focus on anything but the complete agony I was in and the faces of nosey passers by. Though faster than my journey down to the prom, my journey back had been a whole lot less controlled. It wouldn’t surprise me if people were under the impression I was just another drunk, rather than a mum just trying to push her ever failing body as far as she could. The kids got their ice creams as I pulled myself together. 

An agonising car ride later and I was once again home. As soon as I could I sloped off to bed, stretching flat my now completely broken body and telling my father about the day we had had at the coast. He told me I should get a lightweight scooter. Things would be so much easier! Minutes later my husband told me I should have cancelled. 

But I couldn’t do any of those things, cancel, wheelchair, scooter. 

To cancel would have let down Gran and the kids, who had all been looking forward to this treat. So why not use my wheelchair or a scooter? Because I’ve been doing better. I’m managing. I’m supposed to be building up my stamina. 

But, as I lie here broken and close to tears, I have to ask myself if that’s truly what I’m doing. Am I building myself up or breaking myself down? When I was taught to cope with my ill health it was all about being as active as possible whilst making sure to pace out every aspect of my life. Is sitting down at each point I cannot physically stand any longer pacing? Or giving up and not going altogether on bad days, is that pacing? Or, is pacing using aids such as a wheelchair or scooter in order to make the best of what energy and pain reserves I do have? Maybe then I’d have had it in me to make it onto the beach rather than just watching videos taken by my husband. 

The Truth Behind the Smile. 

The Truth Behind the Smile. 

I’m forever telling people, don’t judge a book by its cover because so so many disabilities are invisible. This isn’t just something I preach on my blog. It’s a mantra I live by. I often find myself vehmenantly describing how difficult things can be for people who appear perfectly fine. I’m almost as often shot down by people who will never understand and choose to believe we are all Such Scroungers but that is not the case. 

In this blog I hope to prove to you that you really cannot tell by looking at a person whether they are well or not. I hope to show you how these things can be well hidden, with the aid of this photo… 


Just looks like and other mum with her kids doesn’t it? Care free and having fun on a trip to the cinema. No sign of anything untoward. 

But that’s not true, here’s the story behind the photo… 

My health recently has been on a serious downward spiral. My days are filled with exhaustion and extreme pain. Pain I wouldn’t wish on my worst enemy… well, in theory. Pain I definitely wouldn’t wish on most people anyway. My WORST enemy could possibly have a wee taste; but only because their treatment of me likely set the ball rolling to the crippled shell of a woman I am now. But I digress.. The pain is severe, severe enough to leave me biting back the tears most days. That and the exhaustion combines to pummel the wind from my sails every single day; to the point I can only stand to be up and about around four hours on your average day. To the point when the babies bedtime is also mine. To the point where my hands have been too sore to blog all the thoughts I have swimming around my tiny mind, making me feel my head will surely explode. To the point that even though I’m home all day every day, I’m missing my children. Missing them to the point my heart actually aches.. though to be fair that could just be one of my list of ever growing symptoms. 

So, with it being the school holidays, I planned a rare treat. Taking my two eldest to the cinema. Something I only get to do on the rarest of occasions. Even more special, I took them by myself. 

The outing was planned with military precision. I chose a film that was as early as I could manage, but hopefully not running too late. Tickets were booked online in the hope of avoiding a queue at the cinema, my nemesis. (Standing in line has often caused me to pass out cold thanks to a pesky little condition known as POTS.) We chose the VIP seats. Less stairs to contend with. More chance I could be at least a little comfortable. 

Before going I spent literally the entire day resting. Only climbing out of bed to have a shower with my husband. I sat as he washed my hair and body, resting my head against his bare stomach I sobbed quietly as I worried I wouldn’t be able to do it. I’d have to drag the kids home midway out of the film or perhaps wouldn’t even make it there. I sobbed because of the days of extra pain and exhaustion I knew I’d suffer just from going out on such a simple outing with my children. The unfairness and the fear mingled inside me as the salty tears washed down my face and mingled with the flow of the shower. Then I sloped back to bed and laid there as my body slowly dried. Too wrung out to dry it myself. 

Finally the time to leave arrived. I scraped myself from my bed and slung on the clothes I’d chosen. A soft and stretchy jumper dress with a pair of black leggings. Comfortable, expandable, perfect for a body that can go up four dress sizes in ten minutes when my stomach expands, which it does. Daily. You might have noticed my face is makeup free. Not because I don’t like makeup, but because makeup doesn’t like me. I have to think very carefully before wearing makeup as it not only reacts with my skin and causes swollen itchy eyes, it also flares my pain. I was already in all the pain I could handle, makeup was a no. As for my hair, I left it how it dried. Then stealed myself for the task ahead… 

I didn’t tell the kids until we arrived what we were doing. Partly to make it a fun surprise. Mostly in case I had to turn back round and head home. I didn’t want to see them try and hide their disappointment from me, so I told them we were running an errand for their dad. (In hindsight that may have been a mistake as the last time we did that we went to collect him a new car; so running an errand actually got the kids pretty excited.) When the realisation dawned on them the excitement on their face made it all worth while. I knew my efforts and all the pain it would cause was completely worth it. I hope that it is these special memories that will stick with my kids, not the countless days of seeing me worn down and in pain. 

Fast forward to the photo. Seated in the theatre and awaiting the start of the credits. We had come in really early to ensure I was seated and comfortable rather than stood in the foyer. I took some pictures with the kids for a bit of fun and to fill the time. Also, my memory is so hazy these days, pictures help me keep them in focus. 

What memories does this picture conjur? A fun trip to the cinema with my kids. But what do I actually see when I look at the image? I see myself, desperately trying to hold it together for my kids. Painting on a smile and fun to hide the difficulties I go through. I see a disabled woman doing her best to have a few hours of being just like everyone else. Is that what you saw when you looked at it? I doubt it. 

Just as you cannot look at me and see all the problems I have hidden within me, you also cannot look at anyone else. So before you start whispering about Joe Bloggs down the street, just remember; the real story may be very different to the snap shots you see. 

I see you. 

I see you. 

I see you. I see you as your ‘glance’ lingers over me just that little bit too long. I see you look and I see you judge. Not that you’d know. As I walk my eyes flit between the pavement and anything close by I can take hold of. As I sit I stare down at my lap. Avoiding eye contact. Avoiding conversation. The once bubbly character hidden deep down inside. Below pain. Below exhaustion. Below stammers and stutters and a noticeable tremor. 


I know what you think. As I sit here, wilting, in the doctors surgery. The weight of my thick coat weighing down at my shoulders. A woolly cap of my daughters hastily thrown on to hide the greasy mess that is my hair. Sticking up in all directions after a night of hot sweats and tossing and turning. My face crusty and falling apart. My lips splitting and bleeding. I see the assumptions in your eyes. At best I’m seen as lazy, unclean. At worst an alcoholic. Maybe a drug user. 


It doesn’t matter that I’m in a doctors waiting room. My pallid skin, the bags under my eyes, it tells them all they need to know. You may think I’m being over sensitive. Assuming the worst of people. But years of illness teaches you the difference between inquisitive, friendly and downright accusatory. When you have health problems that mean you can, and do, have to ask help if strangers; it’s a skill one has to master. 

I’ve had people yell abuse as I desperately stumbled towards home with my daughters hand in mine. Screaming that it’s ‘disgusting to be drunk at this hour’ with a child no less! Outside her school, parents who had previously chatted to me in the pick up line stepped over me without a second glance the day my symptoms got the better of me and I ended up gracing the pavement. Once again my daughters hand in mine. At four years old she eloquently stood up for me when I stood grasping like a landed fish as a rotund gentleman called me out on using a disabled bay. ‘My Mummy has a poorly heart, she’s allowed to park here!’ He looked suitably ashamed. 

I admit it. My family is my shield. Looking into the loving eyes of my children and the steady gaze of my husband saves me from looking at the prying eyes of strangers. But today, alone in the doctors waiting room, my shield isn’t here. My rescue comes only when the doctor calls my name. I wince as I try to get up too fast and escape what feels like a barrage of ever lengthening glances. 

Fast forward through the usual soul destroying back and forth with my doctor and I’m outside, desperately trying to get to my car. The doctors has no carpark so I’m forced to cling to a wall as I move in my half shuffle half stumble towards my goal. Somewhere behind me I register a friendly voice. “Are you ok?” he asks. His eyes are different. Unclouded by suspicion, he’s just friendly and concerned. I tell him I’m fine, whilst clinging to the wall as though my life depends on it. He thought I’d had a funny turn. “Oh, so this is just your normal?” Yes, unfortunately it is. With that the kind gentleman leaves me to my quest; walking off slower than he needed to, perhaps in case I changed my mind. My faith in humanity somewhat restored, I continue on  my epic quest. 

The truly unfortunate thing about this story though, it’s not my health. It’s not my struggles. It’s the fact that the friendly encounter I had today is not my normal. It’s not even close. My normal is the opposite. It saddens me how surprised I was when I was offered a helping hand. If I could have one wish it would be that people offered me that first, rather than their judgement.