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.

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

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. 

N:Rem Sleep System.. Is it worth it? 

N:Rem Sleep System.. Is it worth it? 

In case you didn’t read my previous blog I’ll give you a little info on the N:Rem Sleep System and why I chose to review it. If you follow my blog, you’ll be aware that I have chosen to trial several products that I feel will be of use to us as in the disabled community. Products that offer to improve our health, or quality of life in some way. It is for that reason that I contacted the N:Rem company. 

The company claims that this sleep system is specifically designed for people who suffer pain. The mattress is integrated with foam tablets of three different densities. These tablets can be swapped around the five different zones in order to effectively create a mattress that is bespoke to your needs. Unfortunately, I was unable to try the mattress as a whole, but I have been trialling the foam tablets on my own sub par mattress at home, here’s my findings… 


It was about two months ago that the tablets arrived in my home. My husband lugged the two huge boxes upstairs and I was shocked by the depth of the foam pieces. Often mattress toppers look thick and luxurious on photographs, but what arrives is a disappointing pancake of patheticness. That certainly wasn’t the case here. The foam was thick and sturdy, you could easily feel the different densities just by giving them a squeeze. 

Alongside the tablets came a comprehensive leaflet with instructions on the best placement of them, to suit pain in various areas of your body. I get all over body pain, but I do find the worst of it centres around the base of my spine. So I planned out the mattress to suit that. (I planned, my husband placed. Not that the tablets are heavy; just a little cumbersome as we have a kingsized bed.) I have to say I was very impressed that the foam easily covered the whole mattress; many places say things are kingsized but they never quite fit. I suppose that comes with the fact these are designed to actually slot into a mattress, rather than sit on top, so they need to be snug. Each density of tablet is a different colour, making them very easy to identify. 


Initially, I was incredibly impressed with the mattress toppers. For the first time in a long time, I found laying in my bed comfortable. The main improvement was to the pain in the pressure points where my body weight hits the mattress. Usually after a nights sleep these areas are pushed and smushed into awkward positions of pain. But not with the N:Rem tablets. With these tablets I could wake up in a much more comfortable state. Making it much easier to get a start on my day. 

I also found that the sleep I did get was deeper. Much deeper. To the point I often wouldn’t move in my sleep. There have often been many nights where I would toss and turn throughout the night, waking even more exhausted than when I went to sleep. Not so anymore. It is only on the highest pain nights that I struggle to get comfortable, rather than almost every single evening. In fact, for the first time in my adult life I managed to sleep the whole night on my side. Even better, my arm wasn’t completely numb and useless when I woke up. The different zones of the mattress tablets allowed my body to sink down where needed, and have extra support in other areas. This lead to the perfect sleeping position. Sleeping on my side is something the doctor has recommended for a while, to aid my digestion, so I’m glad it’s finally an option for me. 

Top tip: If you’re going to invest in a mattress, be sure to also get the correct pillow for your needs. Pillows come in all shapes, sizes and densities and can really make a huge difference to your sleep posture. 

Unfortunately during this trial I’ve had some severe dips in my health, leaving me pretty much bed bound for long stretches of time. It was during these periods in bed that my back pain became incredibly severe. It seemed like the tablets weren’t working. 

Disappointed, I rearranged them. Then rearranged them again. Then did it a third time. Eventually, after trying out pretty much every combination mathematically possible, I gave up. Perhaps my body is just too cantankerous to help? I was dreading writing the review, not sure what I would put. But then something changed, I moved to my husbands side of the bed in order to watch some television one night. The next morning my back pain had lessened. Was it a fluke, or had switching sides really made that much of a difference? I decided I best steal his side on a more permanent basis in order to find out.. for the sake of my readers. 

It was soon clear to me that the problem wasn’t the tablets. Over on my husbands side my backpain eased and the quality of my sleep continued to improve. I do still have insomnia, but when I do drop off it is a deep and refreshing sleep. I’ve also found myself able to nap during the day as soon as I become tired; rather than tripping the light fandango for at least an hour trying to find that sweet spot before eventually giving up. When I discussed this with my husband, he wasn’t surprised. Apparently on my side of the bed there is a me sized dip in the mattress, becoming particularly deep around backside level. 

So that’s the answer, my sub par mattress was making it impossible for the tablets to do their job. 

This is exactly why N:Rem do not provide the foam tablets as a pack on their own. They used to, but realised the customers weren’t getting the improvements they needed. So now the tablets are provided alongside the 2000 pocket sprung mattress, which they slot into. They are then topped with a viscoool layer and finally zipped into a high quality cover. The cover itself can be zipped off and washed, something that really appeals to me as I know life with chronic illness can be somewhat messy. As can life with kids. The whole mattress can also be stripped back for cleaning and airing out, great for those of us with allergies. 


I do wish I had been able to try the mattress as a whole. I’d love to know just how cool the cooling layer is, and if that helps with my sleep. My health issues mean I get severe hot sweats at night, so much so I have to have a fan running all year. The pocket sprung mattress sounds pretty amazing on its own, with the whole set up it must be mind blowing! Also, having just the foam tablets on my bed can be somewhat tiresome at times. My mattress is not designed to hold them in place like the N:Rem is, often they move and spread apart. Plus, I can feel where each one meets the next due to only having a fitted sheet on top; a fitted sheet that barely makes it around my mattress due to the depth of the foam. However, even with all these little niggles I would not be without these tablets now. I can 100% say that they have improved my sleep, lessened my pain and increased my quality of life. 

The N:Rem Sleep System is definitely the top of my wish list! Particularly as there’s a FREE 100 night trial going on at the moment, during which you can test out different combinations of foam tablets to ensure you get the best for your needs. The mattress is guaranteed for TEN years with a free returns policy on it. Finally, there’s an interest free offer that works out at only £1 per night for the sleep system. (I’d probably save that in electric for the fan!) You don’t even need to pay a deposit! I definitely feel a good nights sleep is worth £1 of anyone’s money, don’t you?

To start your FREE 100 night trial click here or to order today click here. Type in THISLITTLELIFE at the checkout for a £30 discount! 

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 may be financial reward should any profits be made as a direct result of this piece. 

A jealous person is a horrible person, right?! 

A jealous person is a horrible person, right?! 

I’m a jealous wife. I’m a jealous friend. I’m jealous of the stranger on the street, the put together mums on the school run, and the frantic ones too. Im jealous of stay at home mums, I’m jealous of working mums. I’m jealous of my hairdresser, the lady in the fish and chip shop and the garbage man. In all honesty I’m jealous of pretty much anyone, well no, not anyone. I’m jealous of the healthy. I’m jealous of the able. I’m jealous of those seemingly better equipped to cope with chronic illness or disability than me. 

To admit to being jealous is a scary thing for me to do. People assume that if you’re jealous of someone you automatically harbour resentment for them. You wish them to fail, be ‘brought down a peg or two’, for them to be miserable. A jealous person is a horrible person, right?  For me I hope, that is not the case. That’s not how I roll. 

Just because I’m jealous of you doesn’t mean I wish bad things upon you. Honestly I am the biggest cheerleader when my friends and family achieve something, I’m always incredibly proud. I just wish I was able to live like ‘normal people’ do. 

It’s hard not to hate yourself when you have a trickle of jealousy running through every adult relationship you hold. Particularly on days that trickle becomes a raging torrent, sweeping away your sensibilities and spewing forth over whomever unwittingly triggered it. Usually this happens on a hard day, a day full of pain and exhaustion, but that’s no excuse. 

I think I find dealing with the jealousy I hold towards my husband the hardest to deal with. My husband is my carer. He does so much for me, and our children. To the point he’s given up work to keep me safe and as well as possible, losing his social life somewhere along the way too. So what do I have to be jealous of? Well, I will tell you…

I’m jealous of the fact he is the main carer now, not just of the kids but of me too. I’m jealous that he can get up on a morning and function, he can do the school run and shopping and anything else needed. I’m jealous that he can run around with our children and make them squeal with sheer delight. I’m jealous that I’m often stuck in my bed and missing the children growing up whilst he’s in the thick of it. I could go on, but you get the idea. What makes things worse is on top of the jealousy, there’s the thought that to be jealous of someone who does so much for you, you MUST be a bad person. 

So I’m letting it go. Not the jealousy, I know from years of experience (and counselling) that whilst ever I’m this ill jealousy will factor in my life. I’m giving up feeling bad about it. 

My jealousy is my own. It’s my cross to bare. I’ve come to realise I’m not jealous so much of what you can do, more because of what I can’t. If I have to choose, I would rather deal with feelings of jealousy than feelings of self loathing. I’ve been there, it’s no fun. So I’ve accepted my jealousy and I’m not going to feel bad over it. As long as it remains a trickle most of the time, and I can still live and be happy for those around me, then I can live with that. On those bad days, well I’ll do my best and I’m not above apologising if I’m in the wrong. As for my husband, he knows me well enough to realise how much I truly love and appreciate him. 

Besides, whilst ever I’m jealous I have the extra impetus to keep trying. Pushing forward. Moving on. Living MY life to the best of my ability. 

Where’s my spoons?!

Where’s my spoons?!

Many people with disabilities which affect evergy levels have adopted the Spoon Theory as their mantra. Indeed when I first read it the words they struck a chord with me. So much so I posted them on social media and asked friends and family to take a look. I wanted them to better understand me. That may have been a mistake. You see, I’ve come to the conclusion that the Spoon Theory doesn’t fit my life. 

Firstly, for those not in the know I shall give a brief description. The Spoon Theory is a concept whereby energy is equated to spoons. Basically as a chronically ill person I would have a finite amount of spoons per day. Each activity I do would remove some spoons until eventually I had none left. The point of it is that we don’t have endless reserves of energy/spoons. 

This is very very true. In basic terms the Spoon Theory is an excellent way of describing life with a chronic condition. However I find I just can’t embrace it. 

One reason is on a given day I have no clue how many spoons I will have any given day. For me there is no set amount to wake up with. I cannot bank on having six or twelve or even one spoon. The theory states that going over your energy reserves on Monday, will take away from Tuesday. This is certainly true. But I can have a completely restfull day, and still have nothing in the tank for the next day. Until I open my eyes and take that first wakeful breath, I have no idea what kind of day it will be. Even then, I can never be sure. 


Often I wake in a morning and think ‘Yes! Today is a good day!’. Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change, sometimes it’s stress. Often I have no clue whatsoever what’s happened. 

On top of this. The amount of energy activities take changes on a day to day basis. I cannot plan my day around how much energy things will take from me. Because I do not know. A shower may be doable on Monday. On Wednesday it may feel like bricks are pummelling me rather than water. My joints may feel stiff and rusty. Everything could take ten times more energy. I cannot count on being able to do tomorrow what I managed to day. 

Finally there’s another complicating factor. Pain. Let me tell you now, you can have all the energy in the world, but if you feel like someone just drove a dumper truck over you you’re not going anywhere! Pain entwines through my entire body in a daily basis. I never know how tightly it will grip. On a good day I can hide it. On a bad day it consumes me. 

So yes. The Spoon Theory is fantastic. But unfortunately it gave people the wrong idea. They thought if I rested I could then plan activities. If I worked my day so I didn’t have more than one thing on, then I could do that one thing. They had the impression that I had some vestige of control. I do not. I try. I try not to let my health rule me. But at best, I’m flying by the seat of my pants through an ever changing roller coaster of pain and fatigue. At worst I’m being pulverised by a Hulk type monster with PMT. Either way, it’s a whole lot more complicated than simply rationing my Spoons. 
PS The original Spoon Theory can be found here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ 

Though I’ve come to realise it doesn’t fit me, it’s still worth a read! 

A sinking ship. 

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

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

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

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

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

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

  

See me. 

Invisible illness. INVISIBLE illness. I N V I S I B L E illness. 

Nope. I still don’t get it. How can my illness be invisible? Is it because of my invisible wheelchair that I use on my invisible bad days? Or even on my good days when I need to walk further than a few feet? Maybe it’s due to my invisible lift, and invisible adaptations within my home? Or it could be the invisible hours I spend in hospitals? 

No. They’re not invisible. But you don’t get to see them. I hide away at my worst. I put on a smile to hide the pain. I wipe away the tears, and rarely do I share my hospital journey anymore. So is that what makes it invisible? 

No. My illness is not invisible. I am not secretly disabled. You, my healthy counterpart, are blinkered. Please, I’m asking you, take off the blinkers. Look closely. 

Look at the way my hair is roughly brushed, but not styled. See how I don’t wear makeup, those dark circles under my eyes. Notice the winces and sharp intakes of breath when I move. The stumbles, trips, slurred speech. 

See how my life has changed. Where my job and social life has gone. See how my friend circle has reduced. See how rarely I leave the house. How much I desperately want to. 

Just look beyond my smile. 

Our illness is not invisible. It’s just not quite as easily seen as some other disabilities. But often, we feel invisible. Forgotten. Left behind. 

So please. See my disability. See how I’m still desperately trying every day to live around it. But most of all, see me. See us.   

 

 

Fingers crossed for food poisoning. 

Fingers crossed for food poisoning. 

So, recently I went on holiday with my family. We spent a lovely but exhausting week at the seaside in a static caravan. Honestly, I really enjoyed it; but even with rest and wheelchair use it took everything out of me. This became more literal on the Thursday when my stomach started playing up. Literally EVERYTHING was coming out of me, via the rear exit. 

These bouts of crippling pain and bowel evacuation hit me in the early hours of the morning. I woke in the night and after rolling around like a landed seal for a while I gave up and sprinted (more waddled, I’m heavily pregnant) to the teeny tiny bathroom. What ensued will haunt me for life. Three hours of bouts where my body felt like it was literally trying to turn itself inside out. Best of all this cycle repeated for the remainder of the holiday, well past heading home. 

On the Monday I could take it no longer. I called my doctor. In their wisdom they professed it just be campylobacter, and I was ordered to provide them with a sample. Now I don’t want to go into too much detail, but harvesting that sample was quite possibly THE worst experience of my entire life. Bar none. (And I’ve had cameras inserted into almost every produce of my body.) But, like the trooper I am, I did it. My husband, bless his heart, was tasked with delivering said specimen to the surgery. A task only made worth it by the look of repulsion on the receptionists face when he handed it over. 

So, my sample was in, and all that was left for me to do was hope. But here’s the strange part. Unlike most, I was hoping that I DID have the dreaded bug! Crazy right?! Wrong. 

If I had foodpoisoning then it would mean a week or do on antibiotics and it would be gone. Poof!! I’m your face bugs, you’ve been eradicated!! But if not? Well, then it means my body was just doing its usual trick of torturing me. As for treatment? Well that would be none existent. I’d just have to ride it out. 

Results day arrived. Like a nervous teen awaiting exam results I called the surgery. NEGATIVE. No bugs here! There’s nothing messing up my bowel other than my bowel. I was, and still am, gutted. Maybe because she was worried about my other conditions, maybe because my bowel cramps were now causing bear constant braxton hicks, or maybe to placate me, she called me to the surgery. There she poked and prodded and tried to be reassuring. I’m doing all the right things (I know). My baby is probably aggravating my bowel (fantastic, that’s just another two months of hell then). Hopefully it’ll settle once he’s here (I hate the word hopefully). But what it boiled down to was this. There was really nothing she could do. 

So here I am. Living with it. Riding out the waves of cramps and tightenings and daydreaming about only having food poisoning. Oh, how sweet it would be to have a problem that could actually be fixed! 

A message to the resident. 

Recently I had to call up the hospital and speak to my doctor about a change in my condition. (One of my conditions, I have many. This one being POTS that causes my heart to race on standing. Only recently it’s racing all the time. Even when I’m laid down. No fun.) Only my, lovely understanding, doctor wasn’t there. He was on holiday. I got to speak to a resident. 

Let’s just say the call got off to a bad start when he immediately began by talking down to me. Clearly to him I was just some uneducated fool who was terrified over nothing. This immediately got my back up as 1) I’ve been told by many doctors they are impressed by my knowledge of my conditions and how I keep track of my treatment etc. it has even been admitted that, as my ailments are rare, I’m more well versed in them than a lot of medically trained staff. 2) I was not, and am not terrified. I’m aware I have this condition and that it’s not life threatening. But when it is leaving me pretty much bed bound I would like to try to improve the situation, thank you very much! 

Things further went down hill when I mentioned the readings I’d been getting from my heart monitor. Let’s just say I didn’t appreciate him  stating “We don’t advocate people having their own heart monitors, it just frightens them.” I think it was at that point I gave him an education, it went a little something like this: 

Look, I am not some hypochondriac freaking out over my symptoms. I was diagnosed with POTS around four years ago and had been suffering with it much longer. I know it causes tachycardia. I also know it is not going to kill me. Fear is not why I have a heart rate monitor. I have one so that I know what my ‘normal’ baselines are. I have one so that when I’m out and about and I feel symptomatic I can check my pulse. I can ascertain if I can make it to the car, if I need to sit down or if I need to lie down right there on the floor. Because I’ve tried making that call on how I’m feeling alone. I inevitably push myself too far and end up getting better acquainted with the cold hard ground, at speed. Let me tell you, using the monitor is preferable. Especially as I’m heavily pregnant! Finally it allows me to track my condition, and if there’s significant longstanding change I can contact my doctor to discuss my options. 

It was at that point his attitude towards me shifted. After I pointed out I was only calling to check I was doing everything I possibly could to help myself, and that I didn’t want to get deconditioned his attitude completely changed. He began saying things to placate me “Well clearly you know what you’re doing” etc etc. 

So my message to the resident, or any other doctor, is this: 

Don’t automatically assume that you are by far the most intelligent person in the room, and definitely don’t assume you know more about the patients condition than them. To you we are just another patient, with another condition you have read about in a text book. But this condition is a huge part of our lives. It affects us every day. How can you possibly know better what it’s like to live with? How can your textbooks equal years of experience? Yes, some specialists are an amazing fountain of knowledge, for whom we are very grateful. But most of you? Well, most of you have the bare bones of information. Listen to your patients. Learn from your patients. But mostly, don’t assume we are hypochondriacs for having tools in our arsenal to help us live.