Yet again I’ve neglected writing down my thoughts here. It’s been more than six months at this point. Wow that’s a big gap. Is a catch up even worth it at this stage.. Probably not. There’s been so much, so many wrongs over the past months, too many to note or remember or write about. I don’t even remember what I talked about here last… Ok, yes January and it’s blues being soothed by spending time with friends. Friends make all of the difference. Period.
Since then I’ve continued on with my volunteering on a regular basis, and that has helped me in many ways – too many to list here. Too many differences have now come about thanks to the friends I’ve made here.
I am driving again.. that happened around the end of June 2024, it was a surprise and when it got going it happened quick! I cannot even begin to tell you how much of a difference it makes to me to have access to a car again. It doesn’t feel real, it STILL doesn’t feel real. I have suffered the indignity of having my PIP taken away from me. In March of 2024 they decided that something has changed / improved in my life and that I no longer qualify to receive PIP. This is.. brilliant news I hear you say, you’ve got better! – Yes, I just wish it was true in any way. They have provided no proof that my conditions have improved in any way and through them saying so doesn’t actually mean it’s true. – It’s simply not. Nothing has changed or improved for me or my conditions. When I look back over it all, it was taken away over just two points. So i’ve been hard at work fighting that one with first an appeal and now a tribunal which I will attend in person to defend myself and advocate for my personal needs. – It’s just another tough battle that I frankly could have done without.
Through all of the PIP shit I discovered that there were some major inaccuracies within my medical records. There was other peoples records mixed in to my own records. Now while I don’t expect the receptionists at the GP’s to go through everybody’s medical records to check for mistakes I do expect some level of duty of care to exist for them to want to have accurate medical records on each patient. Having other people’s details mixed in with your own is simply not good to start with. It was through a medical record ‘omission’ that I believe my PIP points were reduced. Basically nothing was written regarding my foot issues. Period. So it looked as if there were no medical issues with my foot. I think PIP have therefore based their decision on inaccurate information. Inaccurate available information. So off to tribunal we go. Fun times.
The second thing that the PIP poop has made me realise is that GP’s.. Doctors are.. really not worth putting any faith or trust in to anymore. Were they ever? I am now no longer sure, but simply in my experience, I’ve had more negative outcomes than positive ones when seeing my own GP or seeing Doctors within the Practice. I don’t know from where I got the feeling of trust from originally, I think it was because my GP listened to me at the time perhaps.. I no longer feel that is the case anymore. The last visit, which took some time to sort out, including some long waits for replies to emails from another Doctor, and it even took the requesting of a face to face appointment with my GP via this other Doctor, bypassing the reception gatekeepers… It was a complete waste of time. I felt that my issues were not really listened to, or were.. shoved to the side in some of the answers I got. I was told that for an adult of my age, the help that I sought was simply ‘not available’ to me. – I know this is false, but I am now very much… On my own. So it is 100% down to me now to find the help I feel I need and to obtain it. So there we are.. bs merchants selling nothing but snake oil.
Another thing I realised is that we (me and my family) are a family of settlers. We settle. At almost every point where there is something that could go one way, we allow things to go the other way. The negative way and we live with it, we say, ‘oh its okay’, ‘it will be fine’, ‘its alright’, when really it is anything but. We don’t push to advocate for ourselves, yet we feel like we are good at advocating for each other.. We really are not though. That is the kicker. We settle. Because we settle, we often end up being stuck in some way till someone comes along and notices, or gets fed up and makes a stand.. But be careful, and go slowly ahead.. can’t push too hard or too far, can’t be rude (well no, but there are ways to handle and defend oneself without resorting to rudeness). But we do nothing. We don’t question where things don’t feel right, we do.. nothing and expect things to be fixed. I don’t want to be like that anymore. I want to advocate for myself, I want to get to a point where I can truly feel that things are better for me. I want to be selfish about myself for once. I want to deserve that I can be. I want to feel like I have the same right as anyone else to access the treatment and help and support that I require. I feel I owe that to myself.
I’ve realised that.. I am alone. Boy it’s taken me 5 years or more, but it’s all sort of starting to dawn on my now this year. As much as I want to bring people with me – bring them up, I cannot. I don’t have that energy at the moment. I can barely drag myself up here. But the loneliness is fucking real and fuck does it hurt when you realise “that’s you”. Over the years I think I managed to convince myself that I am not as alone as I feel, but really, deep down, as much as people are there for me and I know they are, me in myself and I, I am alone. I am feeling that right now. I have tried over these past years to stop the relentless comparison of myself to others.. those with children, good jobs, a house or property.. Stability, fair enough for them… but that’s not me. Those with their shit together, knowing what direction they are taking in life and having a rough idea of how to go about getting there… but that’s not me. Who am I? – I ask myself that very question every single day I wake up here on this Earth. I also ask myself Why sometimes, if I want to get into some extensionalism before breakfast. I’ve dabbled with “Who cares?” and “Why does it matter?” too.
The past few months have been hard, long, tough months. Something feels like it has shifted and things have just been harder, for me, for those around me, for everyone I guess. People.. put the blame on CoVID. Still.. I know it’s not really gone anywhere, it’s just become one of those things we talk about less and less every day, which as time passes is the usual thing to happen. It’s the human way. I just don’t think it should be credited with every single thing that people are suffering with these days. It has a lot to answer for, and the Government has a lot to answer for too. The NHS and it’s staff did the best they could do. We are all thankful for that. But we really shouldn’t forget that more than two hundred and thirty thousand people lost their life to it in the UK alone. We were not ready to deal with it, and we were guided by some very tightly controlled information. We’ve gone from having that on a daily basis to nothing. ‘Everything is Normal’ now.. – What the fuck is Normal?
It doesn’t get easier by the way, dealing with the loss of Mum. “We grow around it”… Do we? I am not so sure on that. We spend so much time and energy masking our true feelings and boy am I a hypocrite in that sense, but we will move on from that. I don’t feel, five years on, any less saddened by the fact that I am alone in that way too. As I said earlier.. nothing has changed for me. Life.. it goes on as Frost said. It is a true statement. But it doesn’t mean that we go on with it or that we will recognise it when it rolls on forwards. I still feel so very lost here in whatever worldly timeline I have ended up on. What I would give for a hug. Any hug would do, they don’t come often these days. Those 24 hours, the start of them, I was there alone. I was dealing with that alone. Perhaps alone is just my default state of mind? I know others will say I am not alone, and I get that I am not.. alone, but that doesn’t stop the feelings of being alone. Words.. can break your heart too.
It’s been hard since around the beginning of August, and I foresaw this… I gave warning signs, I said to be interested but not to take it on personally, it wasn’t a personal issue, but I don’t feel like that advice has been taken much. Again, easy to say etc etc. But since August it’s been more difficult than usual, or than it has been. This has been compounded by the results of the PIP appeal being unsuccessful. – There’s been so much shit going on lately, that if I let the depression take hold it really would, I wouldn’t see the other side of it again for a long long time. I’d be buried deep within. So some days I try even harder to not be so down or low, to try to involve myself or get involved, and most of the time it feels like its rebuffed, so why am I still trying in the things I try to do. Things are still the same now, a little worse perhaps but it’s not spoken about. It’s too hard to do so. Which frankly only causes more and more outbreaks. I don’t know what to do or what to try, so for a while, I think I have to try… nothing. For the first time on your Birthday, I felt this year like doing something to celebrate it… We had something planned but for one reason or another, it was me alone which did the thing.. There’s that word again. It can’t continue like this forever, something has to give. The energy to try sometimes, simply isn’t there any more. At this stage.. is that what it’ll be like from now on till.. whenever? I really don’t know at this point, but I do know that it’s getting much harder to continue to mask it all away. The fatigue, the stress… It’s just so fucking tiring.
