today sucks

Now lockdown is easing, I’ve had two different hospital departments ring me up last week to book me in for appointments. It was quite nice to go without hospital appointments for the last few months, its been the only real upside to lockdown life.

One appointment was for the podiatrist, he said my new insoles are ready… finally! Feels like I’ve been waiting forever for these new ones. He said he can post them to me or I can come in for an appointment and I said I’d prefer an appointment as if they still aren’t right then he can write down what adjustments they need and send them off there and then, rather then having them posted to me, them not being right and having to go up for an appointment anyway. Made more sense to me to just go in for an appointment. I go there on Thursday morning, I’m really hoping these are better then the last ones as its been nearly 2 years now trying to get these insoles just right.

The second appointment was for cardiology, which I went to this morning and it was a pretty fucking shit experience for a number of reasons.

The first being the face mask, for some reason is provokes such an intense reaction. It makes me feel really angry, really agitated and really anxious. I fucking hate wearing stuff over my face and around my neck, I can’t wear a Halloween mask for the same reason, I can’t fucking stand scarfs either. So as soon as I put that mask on to enter the hospital, my mood completely changed and its not under my control. I just instantly felt on edge and really emotionally dysregulated, I just wanted to take that mask off an leave.

Then I was fitted with a blood pressure monitor which is completely different from the one I was fitted with at the doctors surgery, which stressed me out even more. This one I have on now for 24 hours is uncomfortable, I have the monitor looped around my belt and the wire is all bunched up around my back and isn’t sat flat across my shoulder, its extremely hard to ignore the fact I’m wearing it and I fucking hate it! For bed time I have a softer belt to wear but if possible I’m not going to wear it as a belt, if its long enough I’m going to try and wear it over one shoulder.

The one I had from the doctors surgery a few months back was way better, the monitor itself was in a little bag with a strap, so I wore it over my shoulder which meant the wire wasn’t all bunched up around my back and sat flat around my shoulder. It was barely noticeable and it wasn’t such a stressful experience as this one is turning out to be.

I feel so fucking angry because I don’t feel comfortable and there’s nothing I can do so make myself feel less angry and uncomfortable. I just have to put up with this bullshit till 12 pm tomorrow and then have to drop the fucking thing back off which means wearing a fucking mask again!

I feel so fucking frustrated I want to smash my head in! That’s how intense I feel right now, I can’t wait for this 24 hours to be fucking done!

How I feel is beyond any self soothing skills or any other bullshit skill, I won’t feel better until I can take this fucking thing off.

Before lockdown I could cope ok with changes and sensory things, I was still effected by sudden changes or something that didn’t feel right but I was able to just deal with it and it didn’t often invoke a strong reaction, occasionally is did but not always. But now because lockdown guidelines are forever changing and things are so uncertain and my anxiety is heightened, I simply cannot deal with the smallest of changes or things that don’t feel right. It sends me into a massive internal spin and invokes such intense reactions, which makes me want to physically act out, in hurting myself. Which admittedly I have punched myself in the head, I’ve pinched myself hard, scratched myself, punched my legs. Just anything to stop the intensity of how I feel, the only things I’ve not resorted to yet is cutting myself. Mainly because I’ve not cut for 2 years and 6 months but also I don’t think I’d be able to control myself and I don’t want to have to deal with going to hospital for stitches and being questioned by people.

I’ve been thinking a lot about the idea of maybe being on the autism spectrum because of my sensory issues, the fact I struggle to deal with change and find it difficult to make friends, I don’t like being touched unless I’m in a relationship with someone then its different, I don’t give very good eye contact as I find it really uncomfortable and social situations make me anxious. I also have stuff that I will intensely be interested in, collect etc and same with foods I will eat something for weeks/months on end until I’m sick of it. Also I have a lot of friends past and present who are on the spectrum, which makes sense as people with additional needs tend to gravitate towards each other. I may bring this up with the nurse next week when I go for my T shot and see what she suggest I do and her opinion on whether I could be on the spectrum or not.

Girls with ASD even now get missed and aren’t diagnosed as often as boys are, mainly because when the DX was written about ASD it had boys/men in mind now girls/females. Also girls are often much better at learning how to pretend and mimic their peers, boys don’t often do this and will ore often act out more aggressively so are more likely to be tested for autism, whereas for girls its not often picked up until much later in life.

I was raised as female and actually there’s a high instance of trans people who are on the spectrum, so these two things makes sense as to why maybe if I am on the spectrum it was missed earlier on in my life.

Anyway I’m so over today, I’m going to try and relax and hopefully the intensity of the mass of swirling mess inside subsides enough for me to chill and feel a bit better.

Peace out

Zak

Being brave – asking for help

So a couple of days ago I deleted everyone off FB and at first it was out of anger and frustration and also a bit scary but it’s actually been really liberating as well, I don’t feel like there’s things that are expected of me, as there’s no one to see anything anyway.

Feels good, if people really want to remain friends then they know where I am.

Yesterday I was really down and feeling like I no longer wanted to exist, not suicidal just didn’t want to be here anymore. It’s something I’ve been struggling with for a few months.

I feeling lonely and frustrated, so I decided to go to the retreat at Hahnemann House, it’s a safe place to go if you feel like you’re heading in crisis or are in crisis.

I had the best time, I chatted, did mindfulness, played go fish. It was so nice to be around other people and the best part was for the first time in a long time I actually felt heard! Which for me is so important, as I often feel ignored, left out, not heard etc. It really made all the difference, if I hadn’t gone I could have ended up harming myself.

I’m on my way back tonight 🙂 I’m looking forward to it. Just to not feel so alone and to be safe.

I rarely ask for help, the last few years I’ve been much less open because I don’t feel heard so I gave up bothering.

I didn’t want to go to my GP or back to the psychiatrist because drugs will only mask the root cause which is social isolation, it won’t make things better. I’d rather work on myself to feel better then up my meds and just feel like a zombie.

Anyway that’s all,

Peace out

Zak

Transition update – Week 40 on T

Another week on T and its been a odd week. I haven’t been feeling so great, so I’ve decided not to do a video this week. I don’t really have much to talk about and I’m feeling quite vulnerable and emotional so I don’t want to put myself out there by doing a video.

Part of how I feel is probably the testosterone as I’m due my shot on a week today and some of it is just personal stuff that I don’t really want to share.

So really short and sweet this week. Hopefully I’ll be feeling much better next week.

Week 40 on T

^ This weeks picture

Peace out

Zak

Transition update – Week 17 on T

I feel like there’s so much write, but where to even start. Most of it isn’t trans related but it all has a knock on effect on everything else. My brain is just overflowing, its so overwhelming and I don’t want to deal with any of it, at least not until January. I need to get my head straight and I need to figure out where to even start.

I haven’t noticed any new testosterone related changes, but today I found two white hairs growing out of my face lol! Man I don’t want a white santa beard, I’m too young. I really need to shave, but my voice it still fairly girly I feel. I need to be in a good place in order to start and right now I’m just not in that place.

I’ve been really struggling with depression, anxiety and disassociation which has led to 3 occasions of self harm. I’ve been referred back to the community mental health team, not sure when I’ll be seen though.

The disassociation is probably down to the gender dysphoria and the disconnection between my body and my brain. I talk more about it in the video, its hard to explain and right now I’m really tired and feel really spacey, I’m trying hard to stay in the moment.

I feel like I’ve got a huge mountain to climb and I can’t do it… urgh. I’m over it.

Week 17 on T

^This weeks picture

^This weeks video

Peace out

Batman

Trying to survived in a messed up system

Where to even start?! I suppose I’ll start with the GP appointment I had on Friday.

I had written some notes down the night before so I could just hand it over to my new GP. It was hard to write as it made everything real, it made me feel vulnerable and exposed. I was already feeling vulnerable and exposed, because on Thursday I was open and honest with someone about how I was feeling and what has been going on and that was really difficult. But I felt heard and I felt cared about.

I walked over to my GP surgery, I hadn’t eaten anything so I was feeling dizzy and sick. I felt so anxious, but I had my notes I’d written down, I’d also brought some blog posts that I had printed out and my wellness journal. My new GP called me up to her room, she came across as quite abrupt, unemotional and not particularly empathetic. It didn’t make me want to open up to her, I just gave her the notes I had written and she read them.

She asked me what was the main problem at the moment.. um like everything! I started with the cellcept, I said to her I am not sorting it out with Southampton, I don’t have the capacity to at the moment, I can’t deal with anymore bullshit right now. It isn’t my responsibility to sort out funding for a medication that I take. They approved my last prescription, so I have two months worth but she didn’t seem like she was going to do anything about it. But whatever..I really don’t care.

She then asked me about my physical health and she examined me, I was so on edge I freaked out a bit when she wanted to listen to my chest. I don’t know why they can’t just do it on the top of my t-shirt and why docs have to actually put the stethoscope on my skin. Because she didn’t make me feel at ease, I was so freaking anxious, it was almost like I felt threatened. I really didn’t want her touching me, it felt so invasive. The weird thing is I am so used to having my chest listened too and never usually freak out.

As per she couldn’t really hear anything but said there was a slight wheeze, my temp was up slightly too and my throat was red. She said its viral but gave me a script for antibiotics anyway.

Finally got around to talk about my mental health, which was the main reason I was there. She asked me some questions but she was so cold about it, she asked me to show her my self harm! I out right refused! in all the years I’ve self harmed which is a really long time, not once have I ever been asked to show where I cut. I was so fucking shocked, she acted like she didn’t believe me. She asked me a few other questions, but I had just shut down by this point I could barely talk. She just didn’t really care and just referred me back to the community mental health team, although I don’t know how long I’m going to have to wait to see anyone… but whatever.

I left this appointment feeling worse then ever. I got home and just sat and cried.

Later on in the day I got an email to say my medical records where ready to pick up and that they would be £10 instead of £50. I walked back into town, got some money out and went back to the doctors. I asked to have a look at these so called ‘medical records’ before I paid for them. But what I found made me so fucking angry, upset and frustrated. These so called medical records, where just printed off from my online records, which I have already stated several times are inaccurate! and there are huge chunks of my medical history missing. Like WTF?! this isn’t what I asked for. There was a few letters in there but only a few and they only go back till last year… Non of these shitty online notes are detailed enough, they’re all coded entries. So will make no sense to anyone other then doctors! The surgery knew what I needed it for! Yes I can use the letters but I need way more evidence, its far too little. Last time was fucking horrific! and the main reason was due to lack of evidence, I don’t want to go through it all again. I can’t go through it all over again.

I was so upset, I was already feeling like total shit from the appointment with the GP in the morning, that I just couldn’t hold myself together and I started crying in the doctors reception, while the lady was sorting out a receipt for me. I decided to pay the £10 as I can use a couple of letters, she suggest I write what’s missing and book an appointment to see a doc to see if they can find what’s missing on my notes.. but that’s a waste of time. There’s huge chunks of stuff that’s missing, so I’m going to speak to patient advice liaison services and see if they can advise me on what to do next.

I am so emotionally drained, I don’t have an ounce of energy left to keep fighting for my life. I feel like I’m just fighting for my survival every day, getting by on a minimal amount of food, because I’m just not hungry. I wake up feeling anxious and lost, I go to bed feeling the same way, there maybe brief moments of relief in between.

I read my GP notes after my appointment, she wrote that I denied being suicidal… I didn’t deny anything because I’m not suicidal! I’m depressed and she writes that I said my cuts are superficial, which they are but to me she’s written it like she doesn’t believe me because I refused to show her. Anyway this is what she wrote.

IMG_E6046

That’s it for now, I needed to get everything out of my head.

Peace out

Dyllan

 

Fractured self

I’m not quite sure where to start, so I suppose I’ll start with the two posts that I posted on Instagram, although I don’t 100% remember posting them. It all seems like a very vague memory, or a story that someone once told me. It doesn’t feel like something I wrote last night, it clearly was because its on my account and I’m the only one that can access it and the posts make sense to how I feel at the moment.

The first one says – Laying in bed feeling sick and dizzy, anxiety has come and ruled today. I’ve barely eaten, I did what I needed to do but in between my mind just wandered away. This dark passenger is following me and he won’t let go of me…this is is a scary place to be.

The second one says – I feel like a fractured soul. I feel like someone flipped off the switch the my brain and disconnected it from my body. I feel no connection. Sometimes I question if what I’m doing is even real, if my life is even real. Just watching myself in my life. I feel like a ghost.

In one regard I love these pictures and what I’ve written because, its raw and its real. But I feel no connection to the posts, even though I know I wrote it, I feel like someone else did.

I also woke up with tiny cuts on the back of my hand, I have no memory of doing them either. Its pretty scary not being aware of what’s happening and then being aware and stuff has happened. Even sat here writing this I just keep spacing out, I can feel myself doing it but I can’t stop it.

I found this picture on my phone too from last night IMG_5992 I don’t remember saving this to my phone, but it describes how I feel quite well.

I feel sad, anxious and disconnected, I don’t know if I can fix it.

I’ve dropped like 2lbs in a few days where I’ve not eaten much, I’m struggling to maintain my weight. What I do eat comes straight back out anyway, the anxiety is messing with my stomach so much, I’ve been taking loperamide (not everyday, just twice since Fri) so that I’m not just shitting everything back out again. The trouble with this is I then don’t really want to eat because I like how I feel when I haven’t eaten anything and when I do eat I feel sick. I ate when my friend came down to stay, it was easier because I didn’t feel too bad and I didn’t want him to see how little I was really eating.

Whys is this all so complex…why does one thing affect everything else? I just want it to stop.

I see my new GP Friday, so see what she says. Will print out my most recent blogs, so I don’t have to really say anything to her. Maybe she’ll send me back the the mental health team, but I’m not overly helpful that they will do anything.

Peace out

Batman

 

Trying to keep it together

I decided to write today, mainly so I can get all this crap out my head and stop it from just going around in circles.

I finally managed to get onto my doctors notes… I can’t use any of it though! Its so inaccurate and just not detailed enough. I’m so angry because I was hoping I would be able to use it for my PIP evidence. But no yet another fucking obstacle has been put in my way. I’m so seriously over this bullshit already! I’m done.

In my notes it says I was diagnosed with granulomatosis with polyangiitis when in 2003, which is wrong, I was diagnosed in 2000 I only remember this really clearly because I was still in secondary school and I was ill a lot of the time and I struggled to keep up with the work. It also keeps saying I’m an ex smoker! which I’m not, I’ve never smoked. There’s just so much that is either wrong or just totally missing altogether. Its s fucked up!

And to top off yesterday I waited in all day for an Amazon delivery but I got an email to say delivery attempted! which was fucking bullshit because I was in waiting! I was so furious because I could have taken the dogs for a walk or whatever.

I was so angry and so stressed out and I just couldn’t see how I was going to get this shit sorted out. I was so close to cutting because I just felt so angry and like nothing was within my control and I felt out of control as well. I just felt so intense and just didn’t know what to do and cutting is my crutch, my go to thing to do for release. It has been for most of my life. I managed to control myself and I didn’t cut because I knew if I did I would have momentary release and then I’d beat myself up about giving in. I wish that cutting still wasn’t my instant reaction when I’m stressed out or feeling intense feelings. I have a much better control over it now but it still bugs me that its my brains default setting when things become unbearable.

I don’t know what more I can do other then control the urges, I can’t seem to change this default setting because its been like it since I was like 9-10 years old, so well over 20 years now. There’s a part of me that loves cutting so much because its a buzz and makes me feel great, hence why I’m covered in scars, but it also comes with a lot of shame a guilt and that doesn’t feel so good. Because you’re told its wrong, its not the right way to deal with your emotions etc.. but that guilt and shame isn’t always mine, its given to me from others.

Anger seems to be default mode right now, I seem to tap into it really quickly. Sometimes I can calm myself down quickly, sometimes its takes longer. It depends what’s pissed me off. Again its something I wish didn’t happen so easily, I can go from feeling ok, feeling calm, to just feeling enraged and such intense anger and frustration. Although its not like it every day, I think often it depends on how much I’ve already just dealt with, how I feel physically and what the trigger is that’s made me so angry.

Benefits make me instantly angry because claiming PIP last year was just so traumatic and so stressful and I was just pushed to the edge of sanity. So now my instant reaction is anger because I’m still not over how badly I was treated.

People shaming me for being ill and not being able to do what they want me to do on that specific day also makes me instantly angry. I will not be shamed for something I have no control over.

I’m sure there are other triggers, I don’t want to list them all. I don’t want to get rid of my anger because it often motivates me to do something to change the situation, like today I got up and I was straight onto the laptop writing and letter to the practice manager and my GP surgery to get them to sort out getting me a copy of my actual notes. I just wish it wasn’t my instant response to certain situations. I wish I was more level headed and calmer.

I feel a bit calmer and less crazy today, although as its now midday and Amazon still haven’t delivered my package I’m starting to feel more agitated because I do actually want to take the dogs for a walk today. I don’t want to sit in all day again.

Last night I remembered I was given a health journal ages ago now and I’ve never used it. So this morning I dug it out and started to fill it out for this morning, I think it will be really useful for myself and my doctors that are all involved in my care to be able to see how my day to day life really is. Often when I go to appointments and they ask me how I feel, I answer how I feel that day. I can’t remember how I’ve felt over the last 6 months and that’s another thing I’ve not really discussed is my poor memory. I swear its got worse over the years, I struggle to remember anything and nothing is in order either. Anyway I am going to make it a part of my routine to fill this in on a daily basis and build up a better idea of my over all health. It may also be helpful for PIP, I can copy the pages and print them off.

It’s going to be difficult writing down everyday what hurts and where, what doesn’t feel good etc. But I think its going to be a really important tool for myself and my doctors.

^ This is the health journal

That’s all for today, I think I’ve spilled my guts enough lol.

Peace out

Batman

*Insert*Title*Here*

I don’t usually write in between my weekly posts but I just needed to write tonight to get everything out of my spinning brain. I struggle admitting how I feel because I don’t like to feel so raw and vulnerable but I suppose in order to move forward the first step is actually admitting that you’re struggling and that you need extra support, so yeah this post will be the raw, vulnerable version of me.

My mood is so low that I have the constant feeling of dread in my chest, I almost just want to collapse into myself and just disappear and not exist anymore, though its a different feeling from being suicidal, I don’t want to die, I just want to disappear. Its hard to explain how its different.

Everything just feels overwhelming and just doing small things takes huge effort and energy in order to just complete small tasks, say like brushing my teeth. Even just thinking about it feels too much and feels its just impossible, even though rationally I know its just a simple every day thing.

I feel almost paralysed by the depression, I have to will myself to move to do anything and its exhausting.  I just want to curl up and stop existing to end this pain that I feel inside, its almost like a physical pain that I just can’t get rid of, nothing works, nothing helps. I can’t even explain this pain, I don’t know what it is, it just hurts, so much. I can feel it coursing through all of me and its so uncomfortable.

Sometimes I feel like I’m watching over myself doing things, I’m not really here grounded in reality, just floating around in a endless void. Looking at things that I know I should recognise but I just don’t. I just don’t feel like I’m here, like any of this is real, which impacts the depression because everything seems pointless.

Overwhelming urges to self harm just to get rid of this pain inside, I don’t want to do it and I know the release will be short, but right now any release would be welcomed. But my rational mind knows its not the best thing to do.

I don’t know what to do to help myself.

I know this will pass, it has too.

I know that having to make a new claim for PIP was the tipping point for all this, last time it was such a traumatic experience and it was only a year ago that it was all finally over. I’ve only just recovered from the experience of it all and the thought of doing it all over again, makes me just not want to be here because I just can’t do all that again.

My whole existence is about to come under intense scrutiny again, I’ll be talked to like I’m lying, I’ll be treated as though I’ve committed a crime. This is how the UK government are treating those of us who are most vulnerable.

I already carry so much guilt for my life being the way it is, I feel guilty for being ill with a chronic illness, I feel guilty for having a mental health problem, I feel guilty for being transgender, I feel guilty for not being able to work, most of the time I just feel guilty for even being alive. But that’s made worse by the benefits system, even though I know I am ill and not fit for employment, I still feel like I should be trying more.. I don’t now. I wish I wasn’t ill, I hate it.

I think I spilled my guts out enough for tonight. Usually writing helps me feel a bit better but not tonight. It’s just good to get it all out though I suppose.

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

Auto immune disorders suck!

My year has been pretty shit with the whole benefits thing but my health has really taken a dive this past year and all the stress hasn’t helped with that.

I keep looking back at all the things I did last summer and I feel sad because this years been a wash out. It’s been a mixture of being ill and having no money to do anything.

Yes last year I fractured 5 bones but I had a great time. Other then the fractures my health wasn’t that bad, it was manageable.

Being off the methotrexate has definitely caused most of the issues but I was put in a catch 22 situation. I either carried on taking methotrexate and just put up with the vomiting all the time or I stopped and chanced it. I chose the latter mainly because I had zero quality of life, I was sick at least twice and month and each time it would take me a few days to recover from it. It wasn’t pleasent at all and this had been going on for 2 years and I’d just had enough.

So last November I think, I decided enough was enough and I stopped it. Not really knowing what the knock on effect would be, so I chanced it. After all its better then vomiting twice a month.

The consequences of me stopping the methotrexate have been constant and horrific sinus infections, which often led to chest infections on top of that and its been a huge struggled to get it under control as I’m allergic to loads of antibiotics and one stopped working, another one gave me lots of side effects.

I stopped my antibiotics last week because of the horrible side effects, so I’m just winging it at the moment in hopes it doesn’t rear its ugly head again. But so far so good and I think its the longest I’ve been off antiobiotics this year and felt fairly ok.

Having a chronic illness is frustrating and unpredicatable, which is the worst thing because I can never say for certain how I’m going to feel until the day and how I’m going to feel after a certain activity, for example doing the housework. Some days it wipes me out for the rest of the day and other days I’m still able to carry on with my daily activies, it just depends.

I had a steroid injection in my knee again before I went up to London a week or so ago now and by now the swelling should have gone down but it hasn’t and the knee joint is bulging out still. It’s still quite painful most of the time but I’m waiting to see a physio about my kneecap. So I’m undecided about whether to wait for that appointment or make an appointmet to see my GP about it…This is my life lol! Organising what doctor to see about what and how long do I wait? Do I wait until it’s so painful I can’t walk? or go now when its just about bareable.. ARGH! Maybe I’ll chase up what’s going on with the appointment with the Physio, so I can make an informed decison.

So yeah, I’ve really struggled to keep well this year. No matter what I did nothing helped and there’s only so much resting I can do before I want to blow my brains out.

As you can imagine all of this has had a knock on effect on my mental health, because I’ve ended up being quite isolated, lonely and really depressed. I’ve even felt suicidal, with thoughts of self harm and one self harm incident. Yes that was a culmination of the benefit saga too but its all relevent. It just sucks! I wouldn’t wish my life on anyone.

I’ve kinda lost concentration now and the flow of what I was writing. So I’m going to take a break and wrap this up for now.

Peace out

Batman