Tag Archives: struggling

Independent Struggles

Second day of stumbling around, attempting to survive on my own under these… unpleasant circumstances. You would think it would be better. Easier.

Yeh… It’s really not.

It’s been worse. Now I’m sitting here, in my chair in the lounge, watching Andy Murray, alone and cold, unable to reach the damned radiator and turn it on (there’s a table I can’t move in the way), wrapped up in my mother’s fluffy dressing gown, I’m regretting being alive…

I’m certainly regretting being ill.

It’s been a nightmare day, and it’s not even over yet… Althouth it feels like it’s been about a week already. I’m in turmoil and frankly traumatised as to how much of the downhill slope I’ve actually gone. This morning, as always, I woke up confused, disorientated, with the only conscious thought emerging of that I was supposed to eat my meds… which were not where they were supposed to be. I was distressed and in pain, barely able to move and yet still attempting to find the medication.

Then the dog starts going bananas because the postman is at the door and the bastard just won’t leave the package and go  so the dog with shut up.

Both of my legs were dead (I could manage some twitches with my left, though… score!) and I couldn’t barely even feel them. I couldn’t get up and the dog wouldn’t listen to me. I was distraught and confused, becoming more and more panicked as I tried to make the noise stop so I might at least find my meds.

My father finally made the dog stop. I finally found my meds. I struggled to take my tea and coffee left for me. My back was burning so much I could barely breathe through it, my hands were numb, and I just about managed to get myself up onto my elbow for the few seconds it took to drink each one. Such a fun start to the day…

I lay there, so upset at the fact it was so difficult to do such simple things as get up and drink tea/coffee, anguished at the confusion and disturbed perception of where I was and even who I was… I was also in a rediculous amount of pain in my back. For company, for something for my mind, I somehow managed to get the TV on, playing live shows over TVPlayer on Amazon Fire TV Stick. It helped. After about an hour or so, I realised I had to go to the bathroom – so at that point I was forced to do something about that.

Unable to really move my legs, I dragged myself up to sitting. I pushed my stuffed baby penguin and favourite little pillow into my canvas tote, added my phone and iPad, then proceeded to put it back around my neck and carry it, dragging myself along to the stairlift, and finally into my chair. I had to take a half-glass of wine to dull some of the pain/paraesthesia in my back, and I had another downstairs – I coulnd’t put oils on; I tried (numb hands and small bottles I can barely hold anyway do not mix, especially when sliding with oils).

At least I made it to the bathroom after that, anyway. That’s definitely something very important!

I managed to place myself in the living room. Watched On Demand TV and helped dog with his paralysing fear of overhead RAF planes going around, until 12pm when the tennis started and the dog was happy again.

So here I sit. Many, many, many hours later. Hands are funny – buzzing, numb-ish, tense, a little spasmy and cramping, with some electric shock-like pain. My back, upper legs and torso are all kinds of not OK, from the beginning of real spasms, to buzzing, to cramping, prickles, and burning. My lower legs and feet don’t really feel like they exist and are freezing to the touch (despite being wrapped in a fluffy dressing gown). I am unable to get dressed on my own, and I realise I left my big cardigan upstairs (not realising I would need it). So I remain cold. Borderline frozen. Just hoping I don’t actually die of hypothermia on contract frostbite whilst I’m down here…

I managed to not throw my food on the floor again, at least. It’s a start… But this day is just so hard… It makes me feel terrible that I just really can’t manage for myself. I’m glad I don’t have to do this tomorrow (my mam is off work), I would not be able to cope. I’m not coping now. My head aches, my muscles and bones ache. The isobars are all the way up, pretty much, so clearly having help makes a huge deal as well..  Even putting things out for me doesn’t really work – it’s not exactly being “independent”, is it?

The fatigue is overwhelming. Not having the correct “care” is hurting me and having a direct impact on my welfare: You know, you just don’t realise what a big impact that makes on you until it’s no longer there anymore! The “new” version of Fibro Flareup is hitting me again… and funnily enough, I don’t really appreciate that, either… Seriously, is this day really not over yet??



3rd July 2015: Tribunals & Tribulations

I must go to a tribunal – one to prove I am struggling and ill. That I have to go and prove that my life is so difficult… when I’m busy trying to forget how bad it is… it’s really quite demeaning.

It’s in 7 days. One week. I have no idea how I’m going to – supposed to – cope.

I can’t walk. In constant pain. I’m agoraphobic. I’m terrified of speaking to people. Of going to new places. So… their response is that I must go out to a “hearing venue” to speak to people and prove that my life is actually worse than what they think it is. Without support. Without intervention. I don’t know how I’m going to get through it. I already live in perpetual anxiety… I don’t think a word has been invented yet to portray just how terrified I am of going. 

If ATOS had done their job properly, had listened, had not disregarded information,  had genuine understanding of what it is to be ill or have a disability, then I – and so many others – would not have to overstuff court dockets full of these appeals. Pointless, ridiculous appeals. The PIP (formally DLA) system is so flawed, it’s beyond words.

The “independent assessor” (read: ignorant arsehole) has no intentions of being fair, and this happens. They refuse to believe you. They want more proof and make you of to mini-court. On the other hand, if they really want to see proof that this is difficult, and they want to push all my panic buttons, then they will be left in no doubt when I have the meltdown they’re so clearly vying for…

What do I even say? Am I supposed to say anything? There’s lots to be said… except that I can’t say it. So I say it here. If they care enough, they can read it…


I live my life in perpetual agony. There is no relief. Medical staff will ask about the Pain Scale… Mine is almost never under 7 – being a 6 is an amazing day for me… but any 6 is usually the result of a cocktail of alcohol and 8mg co-codramol on top of everything else I take. Which isn’t much. Then there is the the searing pure hell of a 10+ level of pain where I can do nothing but cry, or scream. Sometimes it’s so bad I can do neither – the intensity is so much that no noise or even slight movement can be made. The only thing that can put me out of my misery then is extreme amount of pain-dulling alcohol… I’ll take 2 or 3 shots, just until I just don’t care anymore. Until I can breathe.

Pain is my life. It rules it. Dictates it. It prevents me from doing much. From moving. Sometimes, it prevents me breathing, and I struggle to fight the pain and continue to breathe whilst the pain radiates horribly through my ribs, or my pelvis, my hands, legs… well, everything. Everywhere. Sitting hurts. Standing hurts. Lying down hurts. Frankly, just living hurts. Nothing helps. It never leaves. It just depends how bad it gets.

I cannot take the usual medication given for such pain. Opiates send me into a psychosis, and NSAIDs have a chance of making me bleed out. I would rather have the pain than lose my mind, or my blood. The Pregabalin takes enough of my mind that the pain hasn’t fried… I can’t afford for what’s left to be taken away.

I struggle with basic living. No, scratch that… I struggle with just living. I don’t feel free in any way. I can’t leave the house on my own… and even when I do, in my chair, it’s scary.  The world is scary. It was scary enough before being reduced to being pushed around in a horribly uncomfortable contraption that feels like a small tank. Now I’m vulnerable, really vulnerable, sitting in this chair, and I really feel scared of everything. Everything is amplified… magnified… traumatic.

Unwittingly I’ve been living, and struggling, with Asperger’s my whole life. Any minuscule control I had over it left when then pain came. It screams inside my head, inside my body, and takes every sense I have along with it. Hypersensitivity I’ve always had, every phobia I’ve ever had, every intense feeling of fear I’ve ever had, it’s all been intensified tenfold or more by this pain. By the frustration. By the fear and confusion it causes. I didn’t like going out or talking to people before… now it’s worse. The vulnerability of my situation… not being able to move or defined myself in any way… it escalates fear, fear gives way into terror, terror shuts down every essence of my being and my mind disintegrates into living hell that I can’t get out of or leave all by myself.

My passions have been taken away from me. I cannot work or do the job I loved. I can’t sing, and that kills me every day. It was my biggest coping mechanism, and now it’s gone. I can’t even walk my dog. I’m taken to the park, in my chair, where I sit and wait whilst other people go about with him and enjoy his company. That’s the closest I get to going to the parkland with my dog. The only joy in life, other than my little family of friends at home, and my dog, is gaming and computer tech. What little of my mind I have left, I use working with these. It stretches my mind, my thinking, helps fill my long days alone. Without it, I probably would have eventually given in and euthanised myself… there’s more than enough pills in the house to do a good job of it.

I feel pointless. I’m a lump in the corner, carried about in a chair, a burden, unable to do anything useful. I can’t work, or pay my way. I’m constantly exhausted and unable to do much of anything that I love. My quality of life is next to nothing… mostly due to being left to rot by the NHS (for both mental and physical health) and being and feeling utterly helpless in knowing what to do about this. With this. Without knowing what it is, how can I possibly know what to do with it to help? I don’t want to make it worse.

I already had enough difficulties in life: I’ve had at least one foot in the door of the Mental Health services since I was 11 or 12. I’ve suffered from physical ill-health with back pain and asthma being the worst. Then the pneumonia came… and after that… this. Somehow my life was taken away from me, and I don’t even know why.

Now, I have to go and prove what I suffer with every minute for the last 20 months – that’s coming into two years. Two years. It’s still not my norm. I still refuse to accept it. I get no external assistance; no help from the relevant services. After requesting CBT from my GP, the Waltham Forest Access services for mental health subsequently completely disregarded my situation and completely mismanaged my case and care, showing complete disregard for the . They even cancelled my one and only appointment for psychological therapies with them in June 2014 whilst I was waiting in the waiting room to go in, 20 minutes after the appointment was due to start, then discharged me (without telling me) after I was sent for a diagnosis for Aspergers with the ASD Unit.

It was only after the ASD Unit themselves requested that I have CBT that I was finally seen for a psychological assessment, in November 2014, after which I was told I would be put on the waiting list, which was at least 12 months long. I first requested this help back in March 2014… Now I wasn’t even going to have my first appointment until past November 2015? Nearly two years later? The GP even wrote and petitioned the Access organisation to see me, but it was only because of the efficiency of the ASD Unit. Neither he nor I heard from them again in regards to this. I never even received a letter stating I had been put on the waiting list… just a copy of the letter from the psychologist who assessed me requesting I be placed on it.

No one knows what is causing the pain. I had to wait 9 months between my 1st and 2nd appointment with the Pain Clinic at Whipps Cross Hospital, only then to be told that my one and only test – an MRI of the lumber region of spine, was negative, and was promptly discharged to the Pain Management Clinic at Bart’s Hospital. When I went to my appointment a few months later, the Pain Management practitioner who saw me was in utter disbelief that my pain had gone on so long without any diagnostics done other than an initial blood test and a narrow MRI scan. She told me they could not treat what they did not know, and “Fibromyalgia” wasn’t a diagnosis to be made based on the almost non-existent evidence. She requested I see more specialists and undergo proper diagnostics until they could reach a positive conclusion as to the cause of this agony I live with every day. Finally, someone with probably more clout than my GP had demanded more action from the professionals. There was a possibility now that the services would take my situation more seriously.

After enduring all this, after living through this, through everything in my life that has now become this crescendo of agonising hell, I find it insulting to the point of frantic fury that I have to go and prove it to a court. That someone has the power to say that I don’t – or worse, that it doesn’t matter. That the fact I am unable to remember to take my precious medicine until I’m in agony means I don’t require help in remembering. That the fact I am capable of understanding the “planning of a journey” actually means I can execute it. The fact that everything I say and do is belittled in an attempt to show I am not worthy of being financially aided to manage.

I am still astounded the fact that I am forced to endure more insult and trauma on top of what I already endure every day to prove that this is what I suffer. No longer innocent till proven guilty… Now you’re a benefit fraud criminal until you can prove otherwise, struggling all the while until they decide to believe you.


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