Where do I belong – communities

Where do I belong? Is something I’ve been thinking about for a while and whilst I belong to a few different communities, I don’t really engage with them as much as I would like too, if I did maybe I wouldn’t feel so lonely. But its complicated, I’ve actively stayed away from these communities because I didn’t want to be defined by these certain things. I’m realising that these things will always be apart of me and its ok to engage with these communities and they could be a source of friendships and support. I’ve kinda cut off my nose to spite my face, but I’ve been surrounded by such toxic people who’ve said over and over that you can’t let these things define you because you are more then that.

Now years down the line, those people who said those things are no longer around, but I still have that fear and anxiety around engaging in certain communities because I don’t want them to be all that defines me and my life. Right now I due to lockdown, I don’t really have anything outside of myself right now because I’m high risk, so I’m not really allowed to do much and I’m struggling to do anything at home on my own, as its so boring.

So what are these communities I belong too, well first one is people with chronic illness. I was first diagnosed with an autoimmune disorder when I was about 15 and I spent a few years fighting against, as I wasn’t given any support. I’ve always tried to fight against it and act like it doesn’t exist, but that never ends well. I think I have a better acceptance of it now but it still kicks my ass, especially when I’m not feeling well. I know from experience there’s a huge online community, full of amazing people but I just don’t engage with it, mainly as I’ve said before I don’t want my illness to define me. I don’t want my life to be boiled down to just a person with a illness.

I also have mental health issues, mainly depression and anxiety but also struggle with disassociation and now this community I’ve ran from because I didn’t want my mental health made worse by others, I didn’t want to become a professional patient, which is such a toxic term and insinuates that someone is attention seeking and not really mentally unwell. I’ve also felt that because I’m not in and out of hospital and I don’t outwardly express how I feel that I’m not unwell enough to be in the community. I mean its a whole mess of not nice feelings surrounding the mental health community, so right now I’m not sure its one I can really engage with because I think it would make me feel worse.

And the last community is the LGBT community, I am the T in LGBT and it is really a huge community with amazing people, but when I came out as trans I didn’t want to solely engage with the T community, I’m not really sure where that came from, maybe because its how I feel about most communities. I don’t want to feel pigeon holed, I didn’t want my transition to be the only exciting thing about me. But again I think I’ve missed out on making friends and doing things.

I see ‘proud to be trans’ a lot and I think for me that’s now lost all sort of meaning, I’m not really proud to be alive let alone be trans. I just feel too old for all these communities, I feel like I’m not sick enough, not unstable enough, not trans enough, just not enough to be apart of these communities. I just feel like I don’t really belong anywhere, I don’t really know myself but that maybe because I’ve walked away these communities, but these parts of me make up who I am.

I’ve disengaged with life in general at the moment, everyday feels the same. I feel like I’m living in a simulation or something, nothing feels quite real and it seems to be never ending and its so god damn lonely!

I know I need to make an effort and engage more but it feels so hard, I just feel like I’m being annoying all the time and that holds me back from doing anything. I’m so stuck inside myself, I want to reach out but it feels impossible, feels like I’m physically being held in place, frozen. Totally engulfed by the darkness, overwhelmed by the anxiety. I feel like I’m drowning, trying my best to float but I’m getting tired.

I know there’s a wonderful world of different communities that I belong to and can engage with but I’ve been so disconnected from humans, I don’t even know how to interact anymore. I wouldn’t know where to start and feels a bit scary putting myself back out there and trying once again to make friends.

I don’t want to just find people who are only temporary, who forget me if I don’t always message first. That’s apart of why I’m anxious about making new friends. Because I don’t want to make an effort just to be forgotten again, cuz that shit is emotionally exhausting and makes me feel so worthless.

I want so much to have a better life for myself, I don’t want to feel this way forever. But I don’t know how to move on, I don’t know if things will ever get better, right now I can’t see that it will.

Peace out

Zak

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 Β£10 instead of Β£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 Β£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

 

Living my life to accommodate an illness I hate

I don’t know even where to start 1 because I am SO tired and 2 because I have scrappy doodles staring at me, which is kinda off putting. He wants to play but I’ve already played fetch since I got home earlier, he’s so damn cute it’s distracting lol!

Anyway since my last post I don’t feel much better but well enough to go out and see people. I hate being stuck in, I get so bored and when I get bored it really effects my mood and makes me feel low.

Friday I was getting extremely bored by around 3 pm, but I felt too tired and weak to go out and do anything. Sometimes when I feel tired I just don’t know what to do with myself and I find it hard to settle down to do anything at all. But I eventually decided on making cheese biscuits, it’s time consuming but has a tasty result. I enjoy it as well, I’ve always loved baking and cooking since I was small.

After I had made my cheese biscuits I then felt much more settled in myself, I was still really tired but less restless I suppose you can say. I then was able to sit down and play Lego Dimensions and I played for hours. I love this game so so much! Cannot get enough of it. I get totally sucked into the game and lose track of everything, it’s such a great distraction and I played all evening. Such a rock and roll Friday night lol!

Saturday was good, L and the boys came over, although it wasn’t such a happy start as Harvey has been extremely naughty! So I had to have words again and boo licked and cheese biscuit and put it back and when I said that was dirty he kicked off at me, so they both went in a naughty spot! Lil sods. But eventually after they had calmed down and done their time outs we went to a kiddies play area.

It was great as this time Albert is older and big enough to do everything by himself, without having to follow him around and help him. So we just relaxed and chatted for most of the time, but to start with I did go in with boo and show him around, he soon went off and played on his own though…well until he came back for a drink and a person walked past in a Lemur costume and he said its a scary bear, he was so nervous and wouldn’t go back in until it had gone. It was so flipping cute though.

Man was it loud in there! Especially as it was a Saturday and there were about 4-5 parties going on as well. It was a bit of sensory overload for me and was a relief when I got out. I find it hard to concentrate and process things properly when I am in a situation where its loud, bright, colourful etc. I was ok but as I wasn’t feeling 100% it almost exaggerates it.

After we all came back to mine, so the boys could have their dinner before heading home. When they left I fell asleep on the sofa for about an hour but I so so needed it.

I tired to eat my child portion microwave meal but I couldn’t eat it all, I’ll come back to the subject of appetite soon. I still felt exhausted, achy and a bit under the weather. So I took the pups for a wee and then got us all snuggled up in bed and I watched the film Legend, which I cannot get enough of. It’s so good and they got paranoid schizophrenic spot on! A must watch.

Woke up feeling a bit better this morning, had a bit of breakfast and just chilled out. Got showered and dressed and took the pups out for a wee. When I got in I had some time to kill before going out to my friends, so I went for a nap for a hour. I definitely needed it, I just can’t get enough sleep right now.

I got myself on the train to my friends house, even though I’ve done this trip before, I felt so anxious. I just don’t like trains, they make me feel trapped and I am always worried about getting lost. This is going down in my Mindout Positive me journal as something that made me proud today πŸ™‚

Had a good afternoon for Ravenoaks birthday, chilled out and chatted with everyone. Had some party food and even got cake!

Got dropped back to the train station and had to wait a bit for the train but that was ok, I’d rather be early then just on time.

The pups went insane when I walked through the door, scrappy cried and both were jumping all over me. Spent some time fussing over them and playing with them for a bit.

I did want to have a nap when I got in but I had other bits to do before chilling out.

So yeah that’s what I’ve been up too since my last post, it’s been good fun. I have struggled to get through it though, not because of my mood as that’s been alright. It’s been because of being sick on Wednesday and I’ve since struggled with my appetite…again.

Its so frustrating, just as I was back on track and eating properly, I get a set back. Some of it is because I am worried about being sick again and some of it is because my stomach is still a bit tender and I feel sick because I’m not eating properly and because I’m not eating properly I am just even more exhausted then I usually am, its such a vicious circle.

I find it so hard just to stop over thinking it and EAT! I have such a awful relationship with food anyway, which goes back to childhood and being forced to eat dinner even though I didn’t like it or wasn’t hungry. I’m not a foody person with a big appetite.

I know this will pass in time, its just such an annoying set back after all the hard work I put into eating better and properly. Its just like I have to work hard to do anything in my life, even simple things like eating. I can’t just eat, or I can’t just do anything without planning, or pacing myself, or whatever.

I just wish things were a bit simpler for me and I wish I didn’t have to live my life accommodating an illness that I just despise having. Having Granulomatosis with Polyangiitis not only causes me all the physical symptoms that I have but it also causes me so much emotional distress. It makes me angry, frustrated, down, depressed..etc but I get no emotional support for it. I got diagnosed at the age of 15 years old with this massive life changing condition and I got no help and I still don’t really and that in itself makes me really angry. Justifiably so as well because as I said I have to basically have to live my life around an illness that I do not want and hasn’t improved since my diagnosis.

Anyway I have eaten more today then I have since Wednesday, which is good and hopefully this will kick start my appetite back up again, as I certainly need a bit more energy.

I’m not looking forward to tomorrow afternoon, as someone is coming over from Diverse abilities to help me start my appeal for PIP, I just know its going to be so stressful and I just want it over with already. I know I can sort this and I will sort this because I am entitled to this money, I’m not a faker. I’m just emotionally, physically and mentally utterly exhausted and this is yet another battle to fight. It’s a pretty unnecessary fight as well because of our government, they are making it impossible for anyone to claim disability benefits, as they simply don’t want anyone on benefits…We won’t go down this road too far or I will just wind myself up even more.

Before this woman comes over, I have to do the housework as right now its a complete pit lol! and hasn’t been cleaned since Thursday. I feel extremely stressed already about tomorrow, definitely lots of mindfulness and relaxation is needed to get through and after I will have to do something nice to de-stress, like take the dogs out or play on the ps3 or have a sleep lol!

Going to wrap this up now as I’m tired and want to get to bed.

So how do I feel right now? I’m emotionally, mentally and physically exhausted. I’m feeling stressed about tomorrow but I know I will get it sorted and win my case. But I do feel ok and that’s ok.

Peace out

Batman

This journey sucks right now!

I don’t really have a lot to say, other then my mood is pretty low at the moment, mainly due to gender dysphoria and because I threw up last night…not sure what the cause was :/

I’m just tired, emotionally drained. Like I need a rest but how do you rest your emotions. I mean I try and take care of my emotional needs but it’s difficult because emotions are not really something that you can get rid of, it’s not like being tired and needing to sleep. Even using my DBT skills can be emotionally draining, disassociating from my body every day is emotionally draining. But if I don’t do either I will be worse…it’s such a catch 22 situation, whatever I do I’ll be worse off. So where do I go from here? I just don’t know but I know I have to carry on because I have no choice. Death will never be an option until I am old because if I die now I die a female and that’s not what I want, I want to die as a man.

Got lots to distract me this weekend, so at least I’ll be safe… for now. That’s not to say I won’t be safe after but I don’t know where my emotions will take me right now.

I keep thinking I have made my life harder with this transition. But I have to remind myself that my mental health has been much better since coming out as transgender but again it’s swings and roundabouts. Short term I have to deal with the gender dysphoria and all the shit that brings but I know in the long term I will be a happier person.

It’s just frustrating when I am stuck in this limbo waiting to be seen at the gender clinic. Meh… :/

This is probably the most depressing post I’ve written in a while. People think that I have it altogether and I cope, I am very good at acting, I’ve learnt that over the years. I have to cope and have myself together because I have nothing to fall back on. If I fall I have to pick myself back up and that’s difficult. I know I have some lovely friends around me to help. But it isn’t their job to look after me and I will only become a burden, so I have to do it myself. I know my counsellor would disagree with this, but I do and will accept help from friends but I am very protective of my heart and don’t let people close easily, because I’ve been hurt millions of times before and I don’t want to be hurt again. My heart is still in pain from losing my dad and I don’t think that will ever go away. I have to look after myself, sometimes its a good thing, sometimes not but I don’t want to risk it.

Peace out

Batman

Mayday camping

So this May bank holiday weekend was LONG!

Got to the camp site at about 7 pm and it took a few hours to get all the tents set up. It was a bit frustrating as some of the young people, weren’t listening etc. But it was a good 1st night. The young people didn’t all get to sleep till about 2:30 am – I couldn’t relax till I all heard they were in their tents. Then I started falling asleep, it then hit about 3 am and WOW did the temp Drop! I WAS so cold! Took me AGES to warm up and get to sleep, then I got woken up by sheep and cockerels making noise! I was SO tired Saturday morning.

Saturday went well, was very proud of all the young people getting on well and working really hard. It was a really good day!

Sunday was hot! I wasn’t feeling amazing from the moment I woke up, as I’d not been getting much sleep. In the morning I had a right go at one of the young people and threatened to send him home if he carried on. He was bossing everyone about, messing up the shift rota and kicking people off their posts early because he was bored. He’s a bully and he’s the same at group as well and I am NOT having someone bossing everyone about! He did NOT like being told off, he got in a right strop. But the other staff fully backed me up. So that’s cool. It got to about 2:30 pm and I really wasn’t feeling to well, so I got D to get my shifts covered and my boss S set up her VW camper van so I could have a nap, which was so so nice of her. I was out for about 2 hours. I still didn’t feel to amazing after. I hurt head to toe despite taking regular pain killers. My chest was really sore as well. I didn’t get to sleep till nearly 1 am. It was another restless nights sleep.

Monday – I woke up about 9 am, stripped a few layers off and went down to the toilet. H one of the managers at space was there, she asked how I was and I said I really didn’t feel to well and she said not being funny but you there is always something wrong with you… 😦 this made me really upset! But I didn’t say anything to her. Got back up to camp and told S and D what she said and was a bit shocked by it. So I just packed up my stuff. Stood about for a bit, then when S was free I had said what H said to me and she said that H has been a bit grumpy all weekend. T D’s other half took me home, I felt gutted that I couldn’t stick it out, but I just felt so poorly. I dropped my stuff at the flat and went to Asda, got the animals flea treatment as mum said Fox has fleas.. although I couldn’t see any on her. But tbh they were all probably due. I had a cooked breakfast in Asda, I deffo needed that. Then got myself a few bits and went home. Started sorting my stuff out, putting stuff into wash. Mum dropped of foxy girl, I was so pleased to see her πŸ˜€ missed her so much. I finished cleaning up a bit, put a load of laundry on. Had a nice long shower and got into my pj top. Just spent the afternoon chilling out, watching T.V and I slept for a few hours. S rang me to see how I was feeling, but I literally had just woken up, so wasn’t really up for talking. I did text her to say thank you for checking up on me etc and did mention again that what H said had really upset me. S was really nice about it. Spent this evening just chilling, watching tv and catching up on fb and here.

Mentally I am just feeling pretty down and emotionally drained.

Physically I am full of cold again and I just feel really poorly.

I am going to bed v soon, just going to do my meds for tonight, then take fox for a wee and then crash for the next 12 hours!

Β Me stewarding on car park duty πŸ™‚

Peace out

Tank girl