Counselling – Asking for help isn’t shameful

I went back to counselling sessions about 3/4 months ago now and I’ve found it to be really beneficial and has really helped me to process things I’ve been dealing with and has helped me unpick some real deep routed/ingrained stuff that I hadn’t really realised I had issues with.

I was a bit hesitant to go back into therapy/counselling, for many reasons. But some of these reason had actually come from what others had told me in the past that had become apart of my negative self talk.

One reason I was hesitant was that over my life I have seen a lot of counsellors, therapists etc I’ve done CBT and DBT and at what point is it enough? I kept telling myself, well I’m an adult now, nearly 35 I should be able to manage life on my own, I’ve had lots of therapy, I should have the skills and ability to deal with life… and the list goes on. Lots of I SHOULD’s which are the fucking worst!

Also in the past I’ve had friends people in my life, telling me I’m not trying hard enough, I’m not doing enough to change my life and the situations I find myself in etc and if you’re told that enough times, especially if you have low self esteem like I do, you believe those people and those statements and they become apart of your inner monologue, which you the use to bully yourself with.

I viewed counselling as an adult as a sign that I am failing, have failed at managing myself and my own life. Because of those negative statements I felt a lot of shame about needing counselling again, which is bullshit, the best thing for me at this time was to go back to counselling to help myself.

Things you say to people even if you mean well can be so damaging, especially if that person is like me and is particularly sensitive to other people’s words. Obviously you can’t know what words will hurt people, but its just having an awareness of what you do say may have a bigger impact on a person, whether you meant it or not.

The words we say are hugely powerful and can have a massive impact on the rest of someone’s life, not to be dramatic. But a lot of the things in my inner monologue are from negative things or perceived negative things that have been said to me.

It’s really hard for me to not take things to heart, I often don’t seem like I’m effected by things in the moment but I am very much someone who will repeat something over and over and over a million times and look at it from every different angle imaginable. By doing so I make myself feel so upset or angry by something and often my internal reaction often doesn’t match the actual event and is usually an overreaction.

It is something I have been working on for years as I am very aware I can be seen as overly emotional, but I can also go the other way and have no reaction at all, no response.

Taking things to heart is something I still struggle with a bit, I’m still learning. I am much better at controlling my emotions and reactions to things.

Counselling has been eyeopening and it has helped me process things that I was struggling with on my own. I feel like I have dealt with past hurts from a relationship that ended just over a year ago, that was the main thing I was still really struggling with. It still felt so raw and painful, but that pain and hurt has been worked through, unpicked and it just feels good to have had someone outside the situation to talk to about it.

It has also helped me unpick past friendships and why patterns kept repeating over and over. I lack boundaries with people and because of my kindness and low self esteem I let people walk all over me, I let toxic behaviour to continue unchallenged, I was way too much of a people pleaser, I often didn’t even realise I was being emotionally abused because it was so subtle, but over the years it wore me down.

Before I started counselling I was starting to realise that a lot of my main friendships I had were so toxic and just weren’t good for me. In on particular one I felt like I was constantly being put down, in such subtle ways but now I’m not involved in that situation I can’t believe the fact I let it go on for as long as it did, without even saying anything. I just accepted it because that’s what I thought I deserved.

I didn’t think I deserved to be treated better then I was, I didn’t think I was worthy enough. But since stepping back from these friendships and since unpicking this pattern of negative friendships, I realise I am worthy and I do deserve to be treated better then I have been.

Unpicking life, unlearning behaviours and patterns isn’t something that happens overnight and isn’t something that ever stops. I think its good to continue to keep stepping back and looking at different aspects of life to continue to move forward and to make sure you’re not being taken advantage of and helps you identify toxic negative behaviours, either from yourself or that you are allowing from other people.

Counselling also helped me unpick and look at the problems I have with disassociation and how its your brains way of protecting you and the different effects it can have. IE it can stop medications being effective as there is such a separation being brain and body. Which so so fascinating.

We also talked about my gender dysphoria and the fact that I feel still disconnected to my chest despite having had top surgery, nearly 6 months ago now.

This disconnection/disassociation from my brain and body is something I think I’ve always struggled with ever since I was small. Due to traumatic events, those events being my parents divorce which was extremely messy and painful and then being quite ill from a very young age and finally having a diagnosis as a teenager of a life changing, lifelong illness. Also being brought up in an environment that wasn’t great for anyone’s mental health, let alone a child’s

I have very little recollection of my parent’s divorce and the bits I do remember, aren’t great but the rest I’ve blocked out. I may never fully remember those events, I may have something that one day will trigger those memories. And that’s ok because my brain is doing whatever it needs to do to continue to protect me and keep me safe, which is amazing.

Maybe one day with more inner work and the further down the line I go with my transition I will close that gap between my brain and body and that disconnection won’t be so great. But as with anything these deep routed things take time to heal and takes time to change.

I think because I am a pretty sensitive person that I will need top up counselling sessions every now and then throughout my life, just to keep me going, keep me safe and keep me happy and I’m ok with that now.

You take your car for an MOT, you go to the hospital if you break a leg, you eat food in order to fuel your body to keep going, so why wouldn’t you put in the same effort for your mental health?

Mental health is such an important aspect and even now in 2020 it still feels as though going to counselling is a negative thing. But it really isn’t, it’s such an important part of life, especially if mental health is something you have struggles with.

There is no shame in needing help, there is no shame in needing medication, there is no shame in needing counselling/therapy as and when you need it and for however long you need it. There is NO shame in looking after your mental health.

Shame is such a powerful emotion, it’s one I really struggle with. Sometimes I just feel so full of shame about even being alive and taking up space that I do wonder why I am still here. But again often that shame isn’t mine, its come from words other people have said to me, opinions from others etc.

I am slowly learning how to build boundaries with other, which in turn is helping my self esteem. I’m slowly learning to like myself and who I am as a person, I am slowly learning to change that negative self talk to a more positive self talk. I am slowly learning.

Not everyone’s paths and journeys look the same, there is no time scale that anyone should be doing anything by. Some people learn huge lessons at a young age, some people take longer, some people never learn and change and that’s ok. We are all different, we all experience life differently and we’re all walking different paths to different destinations and that’s ok.

If you think you need some extra help, please access it. See your GP or psychiatrist, look up a privet counsellor (most of which will do a concession charge) talk to a friend, partner, family member. Needing extra help, isn’t shameful, isn’t a sign of failure. In fact asking for help takes such strength and bravery, it is the opposite of failure.

Asking for extra help means you respect yourself enough to know that you deserve help.

I decided last month to end my sessions at the end of this month and I know that I am welcome to go back whenever I need to and for however long I need too and it feels nice to know that whenever I need a little help to get unstuck from life, I have someone I can go to and work things through with.

I am looking forward to this next part of my life, with a new healthier view on friendships and relationships and the confidence to build and maintain boundaries. Even though at the moment my mood isn’t amazing, I feel stronger and I feel more capable of dealing with life in general.

That’s all for now,

Peace out

Zak

Disassociation and other stuff

I’m not sure this post will make much sense, or even have a point lol. But I just need to write things out and hopefully help sort through the mass of thoughts that race through my brain every second of every day.

I’m going to try and make sense of everything, by sorting through things bit by bit.

I’ll start with an update about my weird breath holding thing… basically I’m still doing it and its still frustrating. Nothing works so I’m just trying to ignore it as trying to fix it makes it worse.

I do it the most when I’m feeling tense, which at the moment seems like a lot. I find myself sat on the sofa scrunched up, my whole body is tense and I’m just unable to move, unable to get out of my head. I can sit like that for hours, which I know is disassociation but in a different form then what I’ve experienced before.

This disassociation feels more like an internal struggle, I’d much rather feel all floaty and out of my body, as I feel weightless. But this is so intense and physically hurts my whole body and I feel like I have no control.

When I become aware of how I’m so tense and scrunched up, I try my best to relax my body but I feel so achy after, its hard to get away from this internal struggle.

I also keep getting stuck endlessly and mindlessly scrolling through social media, again feeling really tense and again with chunks of time passing by.

It feels like apart of my brain has just switched off and gone to sleep, which is a simple way to describe what disassociation is. It’s your brains way of protecting you, which in itself in super interesting. But I feel that there is still a small part of my brain that’s awake and shouting to wake the rest of my brain up, which is causing this internal struggle. Because even though I’ve disassociated, my brain hasn’t entirely shut off, so I have an awareness but I’m unable to do anything. I feel like I’m trapped inside my body, its really weird.

I can be sat down, all scrunched up know I need to get up and move because I have stuff to do and but I just cannot move, I’m glued in place. The small voice just isn’t loud enough to wake my brain up, but I can still hear it shouting at me. Which makes me feel even more tense and frustrated because I’m not in control, I cannot make myself move until my brain wakes up again.

I don’t really know if this will change, maybe it means I’m slowing healing the parts of me that needed to disassociate, maybe it doesn’t, I’m not sure.

Hopefully in time, this will improve or at least I’ll go back to fully disassociating.

I’m feeling more tense this week for a few reasons, I’ve come off trazadone, as I felt I no longer needed it, I’m sleeping better and despite everything I’ve just described I’m feeling better too. But the withdrawals of trazadone can make you feel more agitated and I think that’s really hit me this week. Also two weeks ago I had a pretty big hit of testosterone, due to switching over from Sustanon to Nebido and the loading process means having both shots at once! So I think again such a big dose of hormones has really hit this week. I’m sure in time these will both wear off and I’ll start feeling a bit more relaxed.

I’m still struggling to feel connected to myself, which goes back to the disassociation, but also apart of the gender dysphoria as well.

I think when I took a step back from people in my life and took stock of everything, I took a step back from myself and forgot to step back in again.

I feel a bit out of place, a bit out of sorts and just a bit weird. I’m slowly working towards getting back to myself. But I think I’ve always had this disconnect with myself, the gap feels bigger then before.

Talking about this subject in counselling is helping me understand it a bit more, which has been helpful. This week I learnt that my high tolerance to medications could be linked to the disassociation which is really interesting. Even CBD oil, does nothing for me, natural remedies don’t work for me and I’m really resistant to most medications. When I started taking tramadol, I don’t ever remember it making me feel high, like how it makes most people feel. This is definitely something I want to look more into, as its fascinating and I want to be able to react to meds like everyone else does. I also know a high tolerance to medications is also linked to hypermobility as well, which I have. I just want to try and understand my brain better and why it does what it does and if I can help myself in anyway.

I always knew my brain was wired differently to most, but never knew why. I’m still really non the wiser about why I disassociate, as its usually a result of trauma. I’ve not experienced your usual traumatic events like sexual abuse, violence etc. But then my life hasn’t been simple easy, I became ill when I was 6/7 years old, family life wasn’t always easy, my parents divorce was pretty messy but these are the only things I really remember.

My memories aren’t in order and there are huge chunks missing, which again a sign of traumatic event. Maybe it was just a culmination of events throughout my early childhood/teenage years rather then 1 significant event. Sometimes not being able to remember things is frustrating but I know its my brains way of protecting me from bad things.

This week my memory has been awful, its much worse when I’m feeling stressed/tense. It effects my short term memory, I can forget when happened a few hours ago, which is super annoying. If I’m feeling more calm and relaxed my short term memory is better, I have much better recall.

I struggle with routine, I have non negotiable things I do every day, like take my meds, housework, eating, taking the dogs out. Things I need to do to get by. But beyond that I have no interest in the 9-5pm life. Partly because my body doesn’t work that way, my brain certainly doesn’t either. I cannot stand early mornings, I need quiet time to wake up and adjust to the day. My brain certainly takes its time to wake up, its much more active in the evening, early hours of the morning. I like my freedom to do what I need/want to do in order to feel good and take care of my mental and physical health.

I know I have a lot to give this world yet, but I’m not sure what that looks like. Maybe as the year goes on, that will become clearer to me.

I need to keep writing, I keep saying this but I always hold myself back.. Don’t know why I do it.

I can feel myself switching off, running out of focus. So I shall sign off for now.

Hopefully this sheds some light on well me and how I function, which could be useful for those in my life and help them understand me more and maybe it rings a bell with whoever else is reading this.

Peace out

Zak

Living with a chronic illness

I’ve not written much about my health lately, mainly because I’ve been super busy with like a trillion appointments!

It feels great having such a great team of doctors around me but that comes with a lot of appointments. The team of doctors and nurses looking after my care are incredible and I am so grateful for them. I love the NHS!

My Rheumatologist over sees everything, but he is just one Doc apart of my team, I also have a Ears nose and throat doc, physiotherapist, and podiatrist. I also have to go to the hospital for a blood test every 8 weeks. I have two other appointments for my medical transition, I see a nurse every 3 weeks for my testosterone shot and also the gender clinic.

Since January I’ve had a total of 9 doctors and hospital appointments and I have another 7 coming up in the next 6 weeks!

Appointments mean a lot of early mornings and a lot of bus rides and days of recovery from these appointments.

My treatment is going well but like the appointments its takes up time as well. I take medication in the morning and in the evening, which have two pill boxes that I have to fill up every Monday, I do a sinus rinse twice a day, morning and evening but sometimes in the afternoon if my sinuses are playing up and physio exercises.

The treatment itself seems simple but if you add in the human element of chronic pain, chronic fatigue, getting ill, depression, dysphoria, disassociation, insomnia, memory issues and no motivation, then its not so simple.

Some days its so hard to get myself up an organised and get everything done before even leaving the house, that I often can’t get out until 2-3pm. Some days its such a struggle, some days are a bit easier but everyday is hard work.

Mental health has a huge impact on physical health and visa versa, which complicates matters. Even after all these years of dealing with these things it only feels like recently things are more under control and I am being properly cared for, but its still not easy and I’m still learning about myself and learning different ways to deal with whatever is thrown at me.

I don’t think living with a chronic illness will ever be easy and I don’t think its something I’ll every truly accept and its something I’ll never stop learning to deal with. But all I can say is that I am trying my hardest to maintain good physical and mental health, which in itself is a full time job.

Overall things are on the right path, at the moment its about maintaining good physical health with medications, physio, insoles in my shoes, sinus rinses and hospital appointments.

Peace out

Zak

Living with a chronic illness – Hospital appointments

I’ve not written about my physical health for a while, but in the last week I’ve had 3 hospital appointments which was crazy! They’re like buses all come at the same time!

The first hospital appointment was Wednesday 16th Jan was my first physiotherapy appointment and it went really well. He gave me some exercises to do, which I’ve been doing most days. I know I need to do them everyday, but I’m feeling overwhelmed at the moment, so most days is better then non. He basically said that physio and insoles in my shoes will be something I need for the rest of my life because I am on the higher end of the scale for hyper-mobility, of which he said I score 9/9 which wasn’t really news to be. But I came away feeling happier, it seems like I will have continual care regarding physio, which isn’t something I’ve had before and its something I feel I will need for a while in order for me to make sure I’m doing my exercises and that its continuing to help with the chronic pain. He said where my muscles and ligaments are fairly weak from the hyper-mobility, these regular exercises will help strengthen them in hopes that is will help the main areas of my chronic pain, which is lower back, hips, knees and ankles. Overall a good appointment, my next one is in March so I have sometime to do my best with these exercises.

This Wednesday 23rd I has 2 hospital appointments in the same day, which made for an incredibly long, exhausting day.

My first appointment was at Christchurch hospital at 11 am and that was for Rheumatology, as soon as I got there I saw the nurse and she came over and said hello to me, I asked her if she needed a pee sample as I was bursting to go! and she said yeah sure that would be helpful and got me a sample point so I could go. I waited for about 10 mins for my appointment, as I was a bit early. Man its so bloody hot in hospitals! I was all wrapped up in a million jumpers as it was cold outside and had to take them all off when I sat down, for fear of boiling to death! When she had finished up with her previous patient she called me in. She’s quite a young nurse, I think she’s around my age (I’m 33) or a bit younger, she’s so easy to talk to and we talked about everything from my physical health to my transition. Which is great to have a nurse ask questions and actually be interested in me as a whole person. She’s going to ask me physio to write me a letter for the gender clinic re top surgery, as its something I forgot to ask him when I saw him. I said that the physio had said my posture needs correcting and I explained to her, my posture is bad because I often roll my shoulders in and hunch my back to hide my chest as I don’t bind very often and I explained that having top surgery would correct my posture because I wouldn’t have to be always hiding my chest. I asked if he could write a letter in support of top surgery as it may help push things along, she was very understanding and said it makes total sense. The plan is to have a dexa scan (bone density scan) to check my bones, as my last dexa was in 2016, so I’m due a scan. She also agreed its time to see how well I do coming off steroids, as I’ve been on them half my life and its time to see if I can remain well off them. The plan is to go from 5mgs to 4mgs for 4 weeks, longer if I don’t feel great. She said to go which how I’m feeling and then after that go down to 3mgs for 4 weeks and by then I’ll be seen by her again to catch up with how everything is going. I start on the lowered dose tomorrow, I’m a bit nervous, as I know its not going to make me feel so great to start with but I’ll stick with it. Overall another great appointment.

I got the bus into town and I had some time to kill and I was hungry, I decided to treat myself and I went to a ice cream parlour, where I had a Oreo waffle, covered in chocolate sauce, crumbled Oreos and toffee ice cream. I couldn’t eat it all but it was sooo nice and very much needed, seeing as I’d been up since 6:45am!

I got the next bus to Poole hospital and this was an ENT – ears, nose and throat appointment. My appointment was at 2:30pm and I got there 10 mins early and again MAN it was so freaking hot in there! They ran 50 mins late, I was so exhausted and getting a bit agitated because I was hot and wanted to go home. But it was worth the wait and thank god for our NHS we are so lucky to have it. This was a new ENT doc to me, she was super nice and easy to talk too and had clearly read my notes which was great. There were a couple of students in there, observing appointments, I love having students in my appointments because these young people will be looking after me when I’m older and if they are interested in specialising in rare medical conditions then I am definitely all for it! I’ve had meetings with rooms full of doctors, I’m always participating in studies where the hospital shares my tests results ets, I’ve spoken to many student doctors and nurses over the years and I think its really important for them to be observing and learning different aspect of patients that in the future will be their patients. I digress, but its an important point. We had a brief chat about my medical history and asked how I’m currently doing, as to which I said I’m doing well although I’ve had quite a blocked nose recently but I think that’s to do with the cold weather and going from hot to cold environments. She saw me at her voice clinic, so she could have a look up my nose and down to my vocal chords. It was pretty cool to see it on the screen, as she recorded it so I could have a look. She was surprised that I don’t have a hole in my septum, as that is often a symptom of my condition, which as a reminder is called Granulomatosis with Polyangiitis/Churg Strauss syndrome, so that’s good news! She was also surprised that I have no irreparable damage up my nose, vocal chords or wind pipe, despite the fact I’ve had my wind pipe chemically widened a few times in my late teens early 20’s. She said everything looks great and it shows that my condition has been well controlled over the years. She agreed to see me again in 6 months to touch base but if I need anything in between then I can call and see her sooner if I need too. Again despite the long wait, it was worth it.

I”m really happy with how things are going for me health wise at the moment, I have a great team of doctors looking after me and I feel listened too which for me is so important and I also feel involved in my care, which is something I’ve not had before, mainly because I was 14/15 at the time I of my diagnosis.

The long day didn’t hit me until Friday afternoon. Friday morning my mum came round at 9:30 am, she helped me sort out the curtains in the bedroom as I had just thrown them up years ago, they’re too long and I’d not pulled the string through so they were really baggy at the top. She showed me how to do all that which was cool as they look better now. We went to a cafe, for a drink and a scone which was nice. She dropped me back and I went for my testosterone shot at 12pm. After I walked home, I got the dogs ready to go out (didn’t leave straight away) and as it was nice sunny and fairly warm, we got the bus to Hamworthy park. It was such a nice walk, at one point I was sat on the bench watching scrappy running in and out of the sea and foxy just wandering about with the warm sun hitting my face, just perfect. We got back about 3:40, scrappy had to have a shower as he was covered in sand. I fully reclined both sides of my sofa, covered it with blankets, did up the hot water bottles and ordered some lunch/dinner. After I’d eaten a wave of tiredness came over me, I snuggled up on the sofa with the dogs and the cats and I think I fell asleep for about 2 hours. It was so needed, I’d felt exhausted all day but it didn’t really hit me till I stopped and that exhaustion lasted till Saturday.

Its funny I don’t always feel the effects of a long day like that, till a couple of days later. But I’m feeling better today, although that may change this week when I start lowering the steroids!

That’s it for now,

Peace out

Zak

Vasculitis sucks! – living with a chronic illness

Yesterday was so long and exhausting, not only did I have to go to Christchurch hospital but I also had to go to the chemist in Bournemouth hospital… but that’s a whole other story.

Yesterday I saw a vasculitis nurse because I’ve been having nosebleeds and I’ve had a chesty cough for a few weeks.

But this nurse wasn’t qualified to write a prescription and she wasn’t qualified to listen to my chest. It was all very frustrating because as my bloods, blood pressure and pee sample we’re all fine there wasn’t much she could do…

So she ended up calling in my Doctor to listen to my chest, which of course was clear. But he gave me a prescription for antibiotics as I have been coughing up green crap so that’s indicative of an infection, but I have no other real signs then that. He also is going to refer me to another ENT doctor as my current one is a jerk! Last time I saw him I was really ill but because my nose looked fine then I must be fine… so hopefully a new ENT doc will be more thorough.

The only good thing the nurse did notice with me is that I’m not steady on my feet and she asked me questions about my legs and I explained my knees bend back and both knees turn in and as a child I had my shoes built up by the hospital and had special in souls made as well, but I’ve had nothing as an adult other then physio on my legs. So she’s going to refer me to a physiotherapist, which is cool and a pediatrist to have a look at me, although I’m not sure in souls will fix this problem but we’ll see what happens. I’ve had problems since with my legs since I was born so I’m not sure how much these appointments will help, but I can only go and see.

After I got my prescription they said I needed to go to the boots in Bournemouth, so I assumed they meant in town, but what they didn’t say was they meant Bournemouth hospital.

I got to the boots in town and they said I needed to go to Bournemouth hospital. I was so angry because by that point I’d been up since 6 am, out since 7:45 am and it was now midday and I was absolutely exhausted and in so much pain with my joints.

I had to wait for half an hour for the bus and when I got to the hospital I was waiting for about 25 mins for my meds.

I didn’t have to wait too long for the bus back but that took an hour. M

I slept for a bit when I got in, which was much needed.

I’m hoping the antibiotics work and my chest feels better and hopefully these nose bleeds will stop.

On top of all that my gender dysphoria was bad but I’ll leave that for another blog.

Peace out

Zak

Transition update – Week 25 on T

I don’t know where to even start this week, its not been the best week ever.

I’ll stick to transition stuff for now and I may write another blog about everything else I’ve got going on. I probably need to get it out, as I find writing always helps me process me emotions a bit easier then just talking about things.

Anyway transition stuff, again not much to report but I suppose there wont be as I do these updates weekly. Some people have said my voice sounds a bit different this week so that’s cool.

I can’t write anymore, my brain has shut off. I’m tired and even sure how I’m doing right now.

Week 25 on T

^ This weeks pic

^ This weeks video

Peace out

Dyllan

Update – I’ve not written in forever

I haven’t written my blog for about 4 months now, mainly because my old laptop SUCKS! So I since have gotten myself a nice new laptop, it’s a gaming laptop and its a good spec for what I want it for and a decent price too. I have it on tick so paying it off monthly.

Jeez so much has happened in the last few weeks let alone four months. I’m not going to cover it all right now, but I’ll write the basics of what’s been going on and then I’m going to start writing more regularly again.

I don’t even know where to start right now, ummm ok I’ll start with the gender identity stuff. 6 weeks ago I went to the Gender Identity Clinic in London to see the psychiatrist, he was super nice and we talked for about an hour. He gave me the 2nd yes I needed to start testosterone. I was flying high that day I can tell you, I was so happy that finally things are on the move and I’m getting to where I want to be. However I am still waiting on the letter for the GIC about starting T, which is pretty frustrating it’s like dangling a carrot in front of a donkey. But I’ve been ringing up every 2 weeks and tomorrow I’m going to ring up again and chase up the paper work so I don’t get forgotten. I know they have a 8 week backlog of paperwork, which is why I need to keep chasing until  I get my paperwork sorted. I’m starting to get impatient now, I just wanna get started on my new journey. I feel as though I am in some sort of limbo just waiting, not really anywhere.. just here not really anywhere. I do also have some levels of anxiety about starting T, I’m anxious that it will make my bipolar harder to control then it already it at the moment. I’m anxious about my chest, as I don’t/can’t bind my chest.. so yeah that’s my biggest anxiety really. Anyway that’s the basics of that aspect of my life, just waiting.

Physical health stuff is doing alright with my new med regime that I started earlier on in the year. The only thing I stopped is the steroid nose drops, as they gave me a migraine every day. I’m not having any side effects from the mycophenolate which makes a nice change and physically I’ve been feeling alright on it. I’ve not had any sinus infections yet, which again is such a relief as pretty much all of 2016 was one big snot fest of a sinus infection, that was my punishment for stopping methotrexate against the doctors wishes.

Mental health stuff…where do I start with this, its been a hell of a 3 months regarding my bipolar. As soon as it became sunny my mood went up but I didn’t think anything of it really until a week or so ago my mood crashed. Looking back on it I was having a hypo-manic episode, it’s not as bad as a manic episode its like a level down from a manic episode. I think I was more annoyed at myself for not seeing it sooner but it is what it is I suppose, I think it took me by surprise a bit.  But on the plus side I got loads of stuff done, made some awesome memories and that so it wasn’t all bad. The come down have been pretty fucking shit though, some days I’ve been so depressed I just wanna die, although I haven’t felt suicidal I just didn’t want to exist any more. Other days I’ve felt really agitated, angry and just really on edge but with loads of energy so I think that’s been a mixed mood state. One day the agitation was so bad that I cut myself… but I don’t really remember much of that day or what happened it was a bit of a blur. I’ve been dissociating a lot as well, so I don’t remember a lot of things that have happened, some days I can’t even remember if I’ve eaten or not. I have big gaps of time missing and trying to recall anything is really difficult and that’s super frustrating. I find the dissociation the most difficult to deal with above everything else. I feel so absent like my body is just floating along and I’m above it with strings like a puppeteer moving the shell of my body along through the days and nights that just merge into one. Even writing this is difficult as my mind keeps wandering off into space somewhere.

This past few days I’ve just taken some time to myself to look after myself and my needs, I’ve slept lots, upped my meds, ate sort of well and I’ve just binged watched tv and played with my fur babies. I think I’m starting to feel a lil more human but I don’t want to get too excited about feeling alright.

I forgot to mention that I started Slimming world 14 weeks ago and I’ve lost 1 stone 3 lbs. Super proud of myself, I never thought I’d be able to lose weight in a healthy way but I have and I especially never thought I’d be able to sustain the weight loss on all the medication I’m on. Highly recommend Slimming world to anyone who wants to lose weight in a healthy way.

So yeah that’s me really in short, there’s probably tons I’ve missed out but I think I’ve gotten the most important things down. Now I have a nice new laptop that takes seconds to start-up, I’m going to write far more regularly than I have been.

Peace out

Batman

Quick catch up – Big News

I haven’t posted for a while as my head hasn’t been in the best place for the last few months or so because I’ve been dealing with so much bullshit. But a few things have changed since the last time I posted, so things are moving forward slowly.

My biggest piece of news is that I finally won my PIP case and its all sorted, which is a massive relief. On the flipside of that I have to reapply for ESA next April/May and my PIP in September. I’m trying not to worry about it too much but its hard not to as I’ve been through 14 months of hell with PIP. I am just trying to concentrate on the now and getting through this coming “Joyful” season.

So that’s my main news, its a bit bittersweet but hey such is life. My other good news is that I finally have an appointment at Southampton General Hospital to see a Vasculitis specialist in January and it couldn’t come sooner, I’ve been waiting for a long long time for this to be sorted out. I know exactly what I want and need out of this appointment, so I am almost bursting to get there and start getting the ball rolling.

I’ve also had an appointment through for the endocrinologist and that’s in March. They’ve already started me on Vitamin D tablets as my levels are really low and they need them to be at a certain level before I can start hormones. So super excited for this appointment but I know that until I come off my steroids I cannot start hormones, which is why the Southampton appointment is so important.

I think that’s all the big stuff that’s been going on over the last few months. My head has been all over the place recently, so its hard to remember things. My mood has been up and down as well but I am starting to feel a bit more settled now.

This is just the tip of the iceberg really, there’s tons of other stuff that I haven’t even mentioned but I will try and post again soon.

Peace out

Batman

Apparently it’s not over…

Last week I wrote about my PIP tribunal results and that they had awarded me 8 points which meant I still qualify for it, well just. No I wasn’t overly happy with their decision but I was just happy it was all coming to and end.

Well I was fucking wrong to feel relieved and to think that is was all nearly over! Because this morning the DWP sent me a letter saying that they are going to request a statement from the tribunal service for them to explain exactly why I was awarded the 8 points and if they do not think their reasons are good enough they are going to request to appeal to courts decision about me being awareded PIP, if they do appeal it means they will be taking it to the high courts, which means they will still continue to withhold my money.

WTF?! I didn’t even know they could do this. Surely once HMC’s have made their decision that should be final.

To say I am angry and upset is just a total understatment, I am absolutely devastated and absolutely furious.

They simply cannot take this further, I just don’t have it in me to do anymore. I can’t keep proving over and over to these people. They have made me feel like I am a liar, that I am a criminal, they have made me depressed and on the edge of suicide.

Sat here in disbelief, I wanted to write as I needed to get some of the anger out but I’m at a loss for words. For the last year I’ve said all I’ve had to said about how angry I am about this whole situation and it just seems to keep getting worse and worse. I feel like all my rights, my voice, my dignity has just been stripped away by these people. I feel like I’ve been left in a dark, cold cell, stripped of clothing, of warmth, light, food, everything. I simply cannot beleieve our goverment is doing this to the disabled and vulnerable people, its disgusting.

2,380 people from 2011 – 2014 killed themselves after being deemed fit to work. Who is speaking for them? Who is fighting for them? Who even cares? I do not want to be a statistic BUT I fear I maybe if the DWP appeal this.

I feel the need to speak up about this but right now I am not in the right head space and I wouldn’t know where to even start.

I can’t write anymore, I feel like I’m going in circles in my head.

Peace out

Batman

PIP Tribunal Results are in…

I had my PIP tribunal Tuesday afternoon, I had my awesome friend come with me. He came down from London for the day just to help me. I was so so grateful as I definitely wouldn’t have got through it without him there with me. He also treated me to ice cream afterwards.

J and I hung out all morning, we didn’t do much just watched tv and chatted mainly. It was nice to catch up and hang out, even if we did have to go do grown up things in the afternoon lol.

The tribunal itself wasn’t too horrific, it definitely wasn’t as bad as I thought it would have been.

There was a Judge, a doctor and a disabilities adviser, the doctor seemed to have heard about my Granulomatosis with Polyangiitis, which was good and the other two were actually nice. I didn’t feel too judged by them, like I thought I would, so I didn’t feel to awful when I left.

I didn’t get their decision there and then, as they said its a lot to talk about and digest so they wanted to take their time, so they sent it in the post which I received today.

I want to list once again what my medical issues are, I wont go into how they affect me as I just can’t go through that again.

Anyway I have:

  • Granulomatosis with Polyangiitis
  • Bipolar disorder
  • ADHD
  • Hyper mobility

I got awarded PIP but I only got 8 point for the Living component and NOTHING for the mobility component. When I was on DLA I was on middle rate care and mobility, my health issues have not changed, if anything they have got worse. So how I do not qualify for mobility is beyond me. It means I have lost £100 a month as well, I do still qualify for the severe disability rates on ESA but I do not now qualify for the free bus pass, so I am hoping my Social Services blue pass comes to me very soon, so I can re-apply for my bus pass.

I am not happy with their decision but I am not going to challenge it because I have only been awarded it until Feb 2018, which means I will have to do the forms again by September 2017. Which is absolute bullshit! My conditions won’t have changed in the next 12months I will still have them. But it does give me a chance to get as much evidence as I can in that time.

So as you can all imagine I am angry but I simply don’t have the energy to fight them any further then I already have.

Once again I have a raging sinus and chest infection, I saw a doctor today but she wasn’t my regular GP as he was busy. I asked for another steroid injection, she said she can’t do another too close, its got to be 6 weeks apart really. I asked about re-starting Methotrexate just until I get to Southampton hospital and she said no…But she did give me 40mgs of oral steroids which she said would make me feel better in 4 hours of taking them but it didn’t. I did leave a message with my GP but he didn’t ring, so I’m going to ring in the morning and see if he can ring me and get something sorted, because I am soooo fucking over this right now.

Anyway gonna wrap this up,

Peace out

Batman