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?

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…

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. 
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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. 

;

*Please note this post contains adult themes and possible triggers. 

I don’t know how to start this blog. Three, four, five times, I’ve begun typing and deleted each and every word. Tracing back on myself until I get back to blank, white, nothingness. Ironic really, because that night that’s exactly what I felt. Nothing. A huge wave of calm came over me. My brain switched off. My heart switched off. Suddenly all I had was nothingness, and my pills. 

I have chronic illness. I love every day with extreme pain and exhaustion. More than any pain I could possibly describe to you. In every single joint of my body, all the time. Sometimes it’s a dull ache, resounding through my joints like the hard beat of a huge base drum. Other times, it’s as though nails are being driven, hammered into each single joint. There’s many different ways the pain manifests. But it’s always there. Always clawing at me. 

The exhaustion makes you feel like you’re caught under a thousand lead weights. Tied to you. Pulling at you. Holding you down. Like every day has been a marathon run, with no time to recover. I often liken myself to a flat battery. From the outside I look like every other battery. But I’m not. I’m useless, running on empty and desperately trying to get through the day. 

But more than the physical pain and exhaustion. There’s the emotional. To see friends move on and leave you, because you couldn’t make it one too many times. To be in relationships where you’re told you’re a burden. You’re useless. You make life harder. That just talking to you is depressing. That doesn’t feel good. To see the disappointment in your child’s eyes when once again it’s a no to the park. It all adds up. It makes you forget the good times. 

So, back to that night. That night was in between Christmas and New Year. I was estranged from my family. My Grandfather had just passed away. My daughter was staying with her father. I had just been told I wasn’t worth loving by someone who had been in my life since I was a child. I was alone. Completely and utterly alone. Not only physically, but emotionally and mentally. I truly felt I had nothing and nobody. Nobody except my beautiful girl, but she was staying with the other half of her family. Her family who were healthy and could give her more than I ever could. 

I was in a dark place that night. A quiet place. An empty pit of nothing. No sensibility. No words of wisdom filtered through the dark. Nobody was there to tell me my girl needed me. That things would and could get better. That though I will always be ill I wouldn’t always be so alone. 

I thought of my Grandad. Of seeing him laid in the mortuary. The pain of life no longer etched on his face. He was at peace. I fixated on the peace. No more pain. No more heartache. A ‘better’life for my girl. Something inside me tripped. 

One hundred and seventy five. They went down like candy. I felt nothing. Handful. Gulp. Handful. Gulp. Handful. Gulp. 

I didn’t know how many I’d taken. That was what they told me. The lady that turned up at my house. Hoisted me off to get checked out. I didn’t call them. Someone in a support group for my health issues figured it out. She phoned. For that I’m very grateful. Though ironically, it wasn’t needed. The tablets I’d chosen only served to cause severe symptoms of the health issues I already had. They would never have done more than that. 

Perhaps it was fate. Or perhaps my Grandad was looking over me. Loving me and protecting me from myself. I choose to believe the latter. 

When I think back on that night my heart jumps into my mouth and my chest tightens. I can’t believe I thought it could ever be right to leave my darling girl. I ant believe I was unable to see the beauty and love in my world. Still now it brings me to tears. I’m so so incredibly relieved of a my tablets I chose the ‘wrong’ ones. That I’m anal enough to only choose the one. That my friend deciphered my cry for help. 

Starting the next day I made changes in my life. I decided that if something wasn’t working for me, it stopped. No more punishing myself for not being enough. No more going for the wrong guys because I didn’t believe I was worthy of the right ones. No more of all of it. 

Years on and things are completely different and exactly the same all at once. I am still in pain every single day. I am still exhausted. I still often feel useless, a burden. But I am not alone. I am married to a man who loves and supports me to the very best of his ability, as I do him. I have a small group of true friends and family, who support me in what I can do and don’t hold what I can’t do against me. I have more children, my beautiful girl has wonderful siblings. I live my life as best I can. I laugh and love, I cry and don’t feel (too) bad about it. The difference between now and then is the difference between night and day. 

Though I will always regret what happened that night, I’m grateful for the changes it forced me to make. I looked critically at my life, and at the things that weren’t working. Then I changed them. It ashy easy, but with each change a piece of me returned. I became more than just my illness. I found my life, my family and my happiness. 

Sometimes you have to hit rock bottom to work your way back up. I will always be disabled. I will always be in pain and exhausted. But now I know I can still love myself, and be loved. I deserve happiness, and so do you. 
*If you of anyone you know are struggling with suicidal thoughts please contact your doctor or nearest hospital. 

U.K. Call Samaritans: 116 123 

U.S. Call National Suicide Prevention Lifeline: 1-800-237-TALK

Broken Promises.

Sometimes I actively hate my body. Today is one of those times.

Yet again it has let me down. It has not lived up to its end of the bargain. It has promised me something and delivered only disappointed and pain.

It probably seems odd to you that I speak of my body in this way. Like an entity I do battle with. But that’s how it is for me. My body is my enemy. My monster in the night. My prison cell. My torture device.

I must be kind to my body. I must treat it with respect and not push beyond my limitations. I must rest when I need to and eat well, take my medications and generally do what I can to appease the beast. But what’s the point?

What’s the point when I do everything right, but still my body betrays me????

I do everything right yet I still end up with tears down my face.

The point is that I have to try. Maybe tomorrow will be better. Maybe tomorrow I’ll be joking about it all again.