About Time…

If you followed my blog, then you might be very aware that it’s been years since I opened up my WordPress and typed out a blog. From posting on here on a weekly basis I faded away to nothing, for a long time I didn’t even post on my personal Facebook or other social media accounts.

I clammed up, closed down and turned my back on all those people who had followed and supported me for the years I’ve written on here.. Not that there’s exactly thousands; but I did have some regular readers who were wondering where I’d disappeared to and if something had happened? I’m sorry to those who reached out worried, I think I messaged everyone back.

Honestly, something did happen. My life was turned upside down and inside out in a way I never expected it to be. A way I still can’t fully comprehend. Over the course of four months after my third stoma revision I became repeatedly and increasingly ill. I suffered with swelling on my brain, large abdominal blood clots and eventually severe sepsis that almost killed me.

These experiences shook me to my core. I still wake at night sweating and in tears from the nightmares of what I went through. I’m not sure exactly how much I can say on the matter; both because I struggle to talk about it and due to the legal proceedings I’m in the middle of.

So instead of looking back, I’m going to look forward. Since my emergency surgery to clear out the sepsis and my long recovery, I’ve fought hard to retrieve my quality of life. I’m finally starting to feel like I’m at the point where I’m tipping the scales in my favour.

Despite recovering from a life threatening illness and two major surgeries I still enrolled for my art degree last September. I’m now ready to head into my second year and am wanting to challenge myself not to rely on my electric wheelchair whilst in college.

Hopefully I can focus on my future and making adaptations to live my best life with the level of health that I now have. I want hospitals firmly in my rear view mirror!

There’s lots I plan to share on here. I want to open up about what is been like to live with a stoma and how I found travelling abroad. Body confidence issues, both around the bag and also around being a disabled woman in general. Plus how I feel about my fluctuating health and how that affects my mental state. But bare with me, I still feel like I’m taking tentative steps towards becoming the open person I once was.

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 need this. 

I need this. 

I want to work. I NEED to work. Here I am, writing blog posts, working on Facebook pages. All of it, it all boils down to the fact that inside me I have a need to work. 

Financially, we are ok. Things aren’t super amazing; but we’re ok. That’s not why I need to work. I need to do it because there’s something inside me, pulling at me, clawing at me. Begging me to do something, anything! I spend so much of my days in bed. Blood pressure too low, or pain too high, to get up and function. My husband looks after the kids. I’m here feeling like nothing. Less than nothing. I’m here feeling like a burden. 

My disability is what tethers us. What captures us in this financial bind. Mountains of paperwork arrive through the letter box. Questionnaires, forms, payment plans and deductions. A few weeks ago a woman came to our house. She sat in our living room and fired question after question at me and my husband. Prying, peering, into every nook and cranny of our lives. After all, our money comes from benefits, who are we to think we have a right to privacy?! It was agonising. It was degrading. Bad for me, who’s become numb to it over the years. Worse for my husband, who left a high paying job to look after decrepit old me. I don’t want that for him. 

Of course, I can’t work a normal job. Just getting ready for work would be me done for the day. But surely there must be something  I could do?!

Once upon a time I worked in travel. My earnings rocketed as my commission far outweighed that of my colleagues. Customers would queue out of the door just to be seated with the girl who went the extra mile. The girl who cared about their holiday. The girl who believed booking is where the holiday magic starts. I was that girl. There was barely a week went by when I wasn’t in the top ten for sales in the region, or even the country. But none of that mattered. 

I had a boss who belevied seventeen shifts in a row was no problem, especially if you had plenty of days off in the weeks that followed. My body disagreed. My body gave up on me. My body caused time off, sick pay. Disciplinaries. My body caused me to leave that job. Another in a long list of broken dreams. 

But surely if I could do that then, I can do something now?! But why this sudden need? Why now? What’s changed? 

Honestly? Nothing has changed. Nothing, and everything. I’ve always had this need inside me. When I first became ill I tried time after time to find something that would work. Time after time I failed, so I buried this feeling deeper and deeper inside. But it was still there. Still tugging at me. Now though, now it seems almost possible. That’s the change. Through my blog and the relative success it’s brought, I’ve realised that I still have plenty to give. I still have my voice. I still have my passion. 

It all boils down to one thing.During the hours my body won’t move; as my husband is bringing up our children and shaping their little lives, I lie in bed. He is doing something amazing and worthwhile. I’m laid in bed. I know there’s only so much I can push my body to do. Only so much energy I have. But I feel as though I’m wasting my life away. Here in my king size bed with the sounds of family downstairs, I almost feel as though I’m watching the clock tick by on my life. Doing nothing more than filling time until it stops. That’s so depressing. 

So there it is.. I need to work. To feel like somewhat of a provider. To fill those drawn out hours with something tangible. Maybe even stumble upon an old talent, or a new one? 

The only thing left to decide now is if it’s possible? 
Image provided by Lila Yocum

My Relationship with My Bed. 

My Relationship with My Bed. 

As someone with a whole host of chronic illnesses I have found myself in a love/hate relationship with my bed. I spend all day (for me meaning the four to six hours I’m up and about) with my body longing to crawl back into that warm, safe, restful place. Then, when I’m there, I wish I could be anywhere else. 

In recent months this relationship has skewed even more to the side of hate. If this was a marriage, I’d be seeking divorce! Why? Well, a huge part of the problem is the fact that I was duped by an unscrupulous online seller. I purchased myself a new bed and paid extra for the ‘luxury orthopaedic pocket sprung memory foam mattress’. What arrived was a flimsy, foamless thing that barely resembled a mattress let alone the words ‘luxury’ or ‘orthopaedic’. My old mattress would have been better, but seeing as it had spent a night in the garden during one of our beautiful British rainstorms, that wasn’t an option. Of course I tried to complain, but alas it was a fruitless endeavour. 

It’s only when stuck with a lemon of a mattress (after having a semi decent one) that you truly realise how important proper support in bed is. Since this change my symptoms have worsened ten fold. My back pain and issues with joints moving out of place has become so much worse. Each morning I wake in agony. The points where my body touches the bed scream at me. Begging me to do something, anything to help the immense pain they are in. Sleep should be restful. It should leave you refreshed and invigorated. With chronic illness that’s difficult enough to achieve, with a sub par mattress it’s impossible. 

That’s if I even manage to sleep. My insomnia has reared its ugly head along with the increase in my pain. All day my eyes droop and I long for my pillow. Once there, I’m awake! I toss and turn, desperately seeking a tolerable position to settle in. My body runs with rivers ov sweat as something in the mattress seems to exascerbate my already dodgy thermostat. Eventually I become still. Sweating and grimacing as the pain steadily engulfs me. Insomnia now overtaken by what we ‘in the know’ refer to as Painsomnia. When your body is exhausted, desperate and ready for sleep, but the pain curses through your being like a current of electric; forcing your body awake. Of course it’s a vicious circle. The worse you sleep the more symptomatic you become. The more symptomatic you become the more time you ultimately spend in bed. 

Snuggled up in bed with my daughter on a day I didn’t have the energy to get up.

It was as I lay awake in bed one evening, bemoaning my situation to a friend at the other side of the world, that I noticed the adverts adorning my Facebook feed. Almost all were aimed at ‘helping’ one aspect of my disability or another. Many of them were mattresses promising THE BEST NIGHTS SLEEP, EVER!! For all of a millisecond I felt somewhat perturbed that Facebook felt I didn’t deserve ‘fun’ adverts. Is this what my life had come to?? Mattresses and kitchen gadgets?! Then, as I changed position for the umpteenth time, I realised these Big Brother style adverts were actually exactly what I needed to see. I was actually ok with being spied on via my phone, because now I had access to products I otherwise wouldn’t have found. 

One particular mattress caught my eye. The N:rem Sleep System. This mattress has five different zones which you can tailor to your specific needs. Making each area as firm or soft as your body requires. I was intrigued. Even my decent mattress would cause me pain; to get the support I needed for my back it was too firm for my hips, causing them to displace and need clunking back on a morning. The idea of adapting a mattress to suit my needs was very appealing. Also, the mattress has a cool gel layer. A huge bonus for someone like myself who gets hotter than hell itself on a night in bed. Finally, the cover zips off to wash. Perfect! We all know that with disability comes gross bodily functions. A washable mattress is just what I needed! 

Immediately I contacted the company and offered to trial their product. Firstly because if I’m going to invest in something I want to know it is worth it. Secondly, because I was acutely aware these adverts were aimed at my community. Making claims of a better nights sleep and improved overall health. I wanted to see if that was true. 

It didn’t take long before I had my response. Whilst the company couldn’t send out a mattress to trial, they could provide me with the foam blocks which make up the various ‘zones’ of the N:rem sleep system. Obviously this won’t give me the entire package of benefits that come with a mattress, but I feel it will give a good insight into whether their claims are true. If these blocks can make my shonk of a mattress more comfortable, then I’m sold! So, the trial was set. The blocks were posted. They are currently adorning my inferior mattress. Initial results seem promising, but I’m going to give them another few weeks before I do my full review. I want to see if they will actually improve my overall health? If they do, you’ll be the first to know! 

In the meantime… if you decide you want to purchase this mattress for yourself, use code THISLITTLELIFE to get £30 off. 

This blog post is part of a sponsored review of the N:rem sleep system. All opinions within it are my own and in no way influenced by the company. This trial is not available to the general public. It is a one off that has been organised in order to create independent feedback on the product via my blog. 

There is another way…

There is another way…

In the last few months my levels of pain and exhaustion have hit a whole new high. This has left me pretty much bedbound most days. Then awake and restless at night. Alongside all that, my Gastroparesis has flared, meaning I’m nauseous almost all the time. My stomach feels full and bloated and eating, or even drinking, causes severe pain. When everything piles up like this it’s hard to cope. I found myself breaking down and sobbing on an all too regular basis. 

I’m already taking slow release Tramadol, Paracetamol and Codeine for my pain. I also have Gabapentin for nerve pain and other issues. 

Please note, it is not generally advisable to take Tramadol and Codeine together. I have special permission from the pain clinic and have been given clear instructions on safe dosage. Please don’t ever take medication that is not prescribed to you, or at a higher dose than prescribed by your GP. 

I cannot take anything Ibuprofen based due to my IBD, nor can I take many of the anti nausea medications that are on the market. During my last Gastroparesis flare my GP tried me on many of these medications, they either didn’t work, upset my bowel, or worse. What could be worse? Giving me the symptoms of a brain tumour, that’s what. My body reacts to things in very weird and wonderful ways. Waiting for my test results to come back after I’d been told I was displaying all the signs of a prolactinoma was one of the most terrifying experiences of my life, one which I do not intend to repeat. 

So, as you can imagine, my options are now pretty limited. Basically there’s only one thing to move up to. Morphine. Be it tablet or patch form, it doesn’t matter. That’s the only thing left. I discussed this with my husband. Yes, I want to feel better. Yes, I want to be up and about more. But Morphine? I’m thirty years old.  Do I really want to put my, already dysfunctional body, through that? I know that Morphine is a strong pain relieving option. But I also know that any pain relief doesn’t seem as effective on me as it is on others, this could be down to my dodgy collagen. Even in hospital when I’ve been given Morphine intravenously, it’s not had a major effect. I never ever get spaced out or super relaxed. It just doesn’t affect me that strongly. So I’d be putting my body through all that stress, for a minimal effect. I don’t think it’s worth it. 

But what other choice did I have? None. Or so I thought. Soon after our conversation my husband saw an article about the Medipen which he sent over to me. Basically the Medipen is a vape machine which uses extracts from the Cannabis plant, combined with coconut oil. The extracts are completely devoid of any of the chemicals which cause the feeling of being ‘high’. They purely contain the chemical which has the most benefits, CBD. I’m not going to lie, I was wary. Very wary. Cannabis has a lot of stigma around it. Then add to this the fact that you inhale it in a vape machine, meaning you look like you’re smoking. That was too much. 

I’m not anti Cannabis. I don’t believe it’s a big evil drug that is bringing it to its knees. Honestly I don’t. Used in the correct way, I can see why it could be popular. However I am anti smoking. I do not smoke, have never smoked, and have no desire to. I’m not going to lecture people about their life choices, but in my opinion my body has enough wrong with it without me adding to the list. When you think of Cannabis that’s what comes to mind. Smoke. Lots and lots of smoke. Spliffs, bongs, hash briwnies. But mostly dingy rooms full of pungent acrid smoke. That’s the stereotype. The stereotype that is widely spread and etched into people’s minds. But that’s not me. I’m a mother. A none smoker. A disabled member of the community just trying to make the best of my life. 

My initial reaction to the Medipen wasn’t great. But I read the article. I researched. I looked on their website. Mostly I checked out the reviews. Page after page after page of people thanking the company. People with Cancer, MS, Chronic Pain, Chronic Fatigue, Insomnia and bowel complaints, all were seeing results! They were gushing about their great experiences. Better sleep, less pain, more energy. The reviews were astounding. Many even called it life changing. My viewpoint started to shift. Reluctantly I discussed it with my doctor. Terrified by his reaction. What if he thought I was a pot head? I couldn’t believe my ears when he told me to go for it! Recently another patient of his had tried a similar product and had excellent results. He agreed it was time I started thinking outside the box in order to improve my day to day life. Wow! The (unofficial) go ahead from my doctor! 

That night I contacted the company and arranged for my sample. I’ve been anxiously waiting for it ever since. Desperate to try it, but afraid the hype was too much to be true. Honestly, I was afraid to even hope. As for the stigma? I put it out of my mind. I told myself, who cares what other people think?! I need an improvement in my life. I cannot keep going like this, and I don’t want to take opiates. Besides, as with stigma about anything, we just need to raise our voices and educate. Show people they’re wrong. Highlight the true facts of the matter. 

My Medipen arrived this morning. I’m looking forward to seeing how I go with it, and updating you all on my experiences; from my initial reactions (including reactions to it from those around me) to the results of longer term use. Here’s hoping it’s all positive!! I’m just happy I actually have something to place my hope in for once. 

Its arrived!!

Today is a write off… 

Today was very much ‘one of those days’. Last week was a busy week, and it’s most definitely caught up with me. I had no choice but to push on and butt heads with my conditions, and now I’m paying the price. Notice how I said push on, not push through? That’s because to me, pushing through is impossible. I can never push through. I have several conditions, and they will never ever be through with me. One of my pet hates is when people post in support groups about how they’re terribly ill, but they push through and so should we! Don’t get me wrong, I’m happy that they can. But they don’t seem to realise that there can come a stage when pushing through is just not possible. Pushing through morphs into something new, something harder. It becomes pushing against ever encroaching walls that are ready to push the life right out of you. Like a super hero in a cheesy eighties film, where the walls are closing in. Only much less glamorous. Last week I was lucky. I managed to get done what I needed to. But there’s many times when that’s just not possible. 

This being one of the days I was beaten, ironically whilst wearing my Wonder Woman nightie
 

But I digress. Back to today. Today was one of those days. The days where my health not only beats me physically, but mentally and emotionally too. I was stuck at the bottom of a pit of exhaustion and there was no way I could escape. The energy had sapped out of each and every part of my body, leaving me struggling to function. Worse than that though, I was drained of any emotional stamina I may possess. 

Usually on a bad day I try to fill my time blogging, or chatting with friends online. Today I did neither. I sunk within myself and wallowed in my hole. Instead of having a little cry and feeling better, I sunk into a maudlin limbo. Yet I had no reason to feel sad. This isn’t the first bad day I have had. They don’t normally leave me a weeping mess. Today however. Today did. Randomly and without notice I would find myself overwhelmed by sadness, tears streaming down my face. To the point I waited hours to write this blog as I couldn’t face the idea of crying yet again. The tears though, had no substance. For I had no reason to be sad. Or so I told myself. 

I had had a good week. I’d managed to get done what I needed to. I survived. On top of which, I’ve been given the go ahead for my surgery and some writing opportunities have come my way. This is all positive stuff!! But that’s the catch twenty two. I’ve found that when the good things start to happen is when we can feel the lowest. It sounds crazy, but it’s true. 

Let’s look at my list. I managed to get the things I needed done. For me that’s a huge achievement. However, I cannot help but see all the things everyone else manages to get done and feel belittled at my meager accomplishments. I cannot help but focus on the vice like grip my health problems had upon me, even whilst I was trying to do the things I needed. To reflect on the sinewy tendrils of pain that weave throughout my body, forever encasing me in a prison of pain. My operation was ok’d. While this is a great step forward in my treatment, it’s also terrifying. The thoughts of being put to sleep, or worse kept awake, and having my insides fundamentally changed fills me with dread. I struggle enough on a daily basis, how will I cope with recovering from an operation?! Some writing opportunities have come my way. Another exciting and wonderful development. More fear and self deprication. What if my writing isn’t good enough? What if I cannot cope with the work load? What if they change their mind and see me for what I really am, a bored cripple (I’m allowed to say it, I am one) scribbling an Internet diary? 

Absolutely everything has a sting in the tail when it’s processed by my head and heart these days. You see that’s what disability has done to me. It’s stripped me of my self confidence and filled the void with doubt and anxiety. Most days I can ignore the niggling thoughts in my head. I can dispel the creeping darkness inside me with the love and light provided by my family. But not today. Because today I just didn’t have the energy. So today I cried. I was sad. Then I cried some more. Because sometimes I just need to let it out. 

I would love to tell you that tomorrow I’ll feel better and be back to my sarcastic self. But honestly, I don’t know if I will. My health is flaring and exhaustion is gripping me like a vice. But I can tell you this. It’s ok to have days like today. It’s ok to feel exhausted and sad, and as though you’ve just had enough. Feel those emotions, hell wallow in them for a while if you need to. But remember that tomorrow is a new day, and while we can’t guarantee it’ll be better, we know it’s not today. Today will be over soon, so just get through it however you need to and know you’re not alone. 

Remember, it’s just one of those days.