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

Health update – New Med Regime – So far So Good

I haven’t posted for a while in detail about my  health issues and transition, so as I am sitting at the laptop downloading pictures and stuff I thought I would write about what’s been going on in a bit more detail.

In January I finally had my first appointment with my new Rheumatologist in Southampton hospital and it went really well and he was super nice. I saw him again on 2nd March, which was also my birthday lol. He started me on a new med called Mycophenolate 500mgs twice a day. It’s going ok so far, it’s caused a bit of insomnia but I am hoping that will sort itself out. I got back in 4 months time, which is good. I also got to have monthly bloods again now I am back on an immunosuppressant drug, which I’m used too having been on Methotrexate.

This week I saw my new ENT doc at Southampton and he gave me Neil med Sinus rinse, Flixonase nose drops and a 8 week course of Doxycycline to try and get on top of this sinus infection, before we talk about any surgical intervention. Which I understand, he’s got protocols to follow. I really hope this all works out and we don’t have to go down the surgical route. I got a follow up in June.

Mental health stuff is going ok-ish, just still struggling with dissociation, depersonalisation and derealisation. But I am finding that taking pics and posting on social media is helping me stay in the moment. Also I am finding things to do to keep me busy to help keep me in the moment, like playing on the PS4, Lego, playing with the dogs, arts and crafts etc I am really trying my best so I don’t have to go back to the CMHT.

On Thursday I saw the Endocrinologist at the gender identity clinic in London and he said my health issues and medication will not interfere with my medical transition, especially starting Testosterone. Which is absolutely amazing news, so so happy about that. The only thing he did say is that I’m overweight..yup already knew that lol! but he did also say that my last blood results said that my cholesterol was a bit high, so before starting T I’ve got to get my weight down otherwise I will be more at risk of a heart attack. Which is fine, I know I need to lose weight, I’m not happy with my weight as is it right now. My next appointment isn’t until June but I’ve been put on the cancellation list, fingers crossed it will be sooner. My next appointment will be hopefully where I get the yes to start T, so its all super exciting.

So yeah everything is pretty much going ok, I’m happy with my new med regime and I really hope it improves my health.

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

I don’t even have the energy to be angry

In just two days things have changed, my mood has dropped and I feel like shit in more ways then one. I literally don’t have the energy for anything right now, I would just like things to go a bit more smoothly for a change.

Yesterday was a good day for the most part, I saw my brother and nephew Leo for a bit in the morning, I then spent the afternoon with my best friend and in the evening I had my transgender therapy group.

That was all cool and made me happy but I had woken up with a really bad sore throat and generally felt pretty rubbish. I carried on regardless though and it was utterly exhausting.

My appetite is back on track now thankfully, Mon I had beef stroganoff, yesterday I made a sausage and bean casserole and today I had gammon, roast veg, roast potatoes and dumplings, it was really nice, I’d never made dumplings before and I will definitely be making them again. It makes my life easier when I don’t have to stress about eating or not.

So today has been a wash out pretty much, I’m so stressed out I’m almost calm about it all because it’s all out of my control at the moment.

I didn’t get out of bed until 12 pm, I just felt and still feel so ill. Everything aches and hurts, my throat is still really sore and I just generally feel unwell. Just what I need another bug…The doctors are still doing something with my details because I can’t log into their system to book an appointment, which is a bit annoying. So I’m going to ring tomorrow and see if I can get an appointment soon. I need another antibiotic to tide me over until the 18th Feb when I see my bone doc and I will be asking for a new immunosuppressant that’s not freaking methotrexate!

Anyway I dragged myself around to do the housework and the laundry. Got showered, dressed and took the rubbish out. After that I felt so exhausted, I couldn’t do anything more because everything was hurting so much.

The pups had a vets appointment at 3 pm, so I was just relaxing and watching tv before I had to go out with them.

My rest didn’t feel long enough and I still felt so ill but I got myself and the pups ready to go out. Just before we left though, I checked my bank details to see if how much money was in my account, I knew there was enough in there but I always check just in case and I am glad I did! Otherwise I would have go there and wouldn’t have been able to pay as all my money was gone!

I had to ring up the vets and cancel the pups appointment and I have to sort out another appointment tomorrow. I took the pups out for a wee and quick run as they’d not been out yet and then dropped them back.

I went to the bank and I was in there for an hour and a half and for the majority of it I was on hold, being passed to 4 different people, listening to crappy music while I was waiting. The guy that was helping me was really nice and so helpful and he spoke to the peeps on the phone for me because I didn’t know what they were on about lol. I was feeling ill and in pain and it made it hard to concentrate on anything.

The reason my money was taken goes back to Nov 15 when I had that fraud issue on my account and had to get a new card etc. Anyway long story short they didn’t receive my letter confirming that this was fraud and not a transaction that was mine, but because I hadn’t heard anything I assumed it was all sorted…clearly not the fucking case. So they’ve had to start the claim all over again, so they will send forms out again for me to sign and send back. But I won’t be sending them back, I’m going to take them to the bank so they can fax it over so they definitely get it this time.

But whilst at the bank the man that was helping me noticed that I have two different titles on my account! Which is why the fraud team were calling me Miss and not Mr..making assumptions I suppose because they too would have seen both titles on my account. Anyway this means whoever originally changed my details they didn’t do it right, so I need to take my deed poll in again and they can sort it out properly.

Yeah…..One more thing on top of everything else I’m dealing with right now. Yes its been easily sorted but I could have done without sitting in the bank on hold for an hour and a half. I haven’t even got the energy to be angry about it. Its like yup ok of course this is happening to me, after all it is me and life likes to fuck me over at every opportune moment. I’m almost expecting for things to just fuck up now because that’s how it’s been the last few months.

Anyway whatever… So how do I feel right now? I feel achy with a really sore throat. I do feel quite angry right now about everything. Mood is low because of all this bullshit..

Going to sort myself out and get to bed soon and hopefully I’ll feel well enough for group tomorrow. I hope so as I missed last week because I was fucking ill!

Peace out

Batman

Thoracic medicine appointment

I had a great weekend but yeah totally paying for it today, I woke up exhausted and in so much pain.

I woke up about 6 am because I was in so much pain with my hips and knees. So I had breakfast and pain killers and I managed to get back to sleep on the sofa until 11 am.

When I woke up I had just enough time to get showered and dressed, take the pups out and sort myself out ready for my hospital appointment.

It takes an hour on the bus to get to the hospital and a hour back and an hour in there! Two buses there and two buses back.

Hospital appointment went well, sat in a box and did breathing tests and had a chest x-ray. He agrees with me that I need to be given a try of a different immune suppressant, he’s also going to write to my ENT doc to get him to see me regarding my reoccurring sinus infections and he is going to ask about another possible sinus rinse. I told him about my situation with atos and my benefits and he said its disgusting but he’ seeing it all the time. So yeah good appointment and my wind pipe is looking good as well and I see him in 6 months.

Got home, sorted out my med box for the week and sorted out my weekly planner with what bills and appointments I have, so I know where I need to be in the next fortnight.

I wanted to quickly hop on here to write about my appointment before I go and again and totally forget what he said lol!

It was a good appointment and I am so glad he’s totally on my side with everything I said to him, which is great and makes life so much easier when I don’t have to battle against them, because that makes it so stressful. He actually listens to what I say and he responds to what I say and sadly out of all the doctors I’ve seen in my lifetime that’s a very rare thing.

Anyway I’m feeling happy and content still, just tired and achy. I gotta get going to group now 🙂

Peace out

Batman

8 day old post

A 8 day old post that I just didn’t share for some reason…

Two weeks of no methotrexate and I am doing ok 🙂 I feel a bit more energetic which is odd but I am not sure if it is the bipolar or from not being on the methotrexate, its hard to tell the difference sometimes. It could be the bipolar as I have been feeling quite agitated recently.

Stomach is feeling much better, apart from a small sore patch but I think that is from an injection. But apart from that I can eat and it stays in! woohoo lol.

I am still waiting for an email from someone who will be able to help me get seen by a proper specialist in Southampton hospital.

But yeah generally doing much better then I was 🙂 just trying to make sure that I look after myself.

I have stopped making myself eat and sleep when “normal” people eat and sleep because my body is just not in a “normal” routine at all and trying to sleep from say 11 pm until 8 am and eat 3 meals a day is just not working for me at all and is actually quite stressful and I think maybe that is why I’ve been feeling agitated.

I’ve still been struggling to sleep so I’ve decided to sleep as and when I am sleepy, rather then forcing myself to sleep throughout the night because I am wide awake most mornings by 5 am, some days I just rest in the afternoon or I may nap it just depends.

Same with food I’ve been really struggling with eating again and I’ve not been eating proper meals purely because that’s not what my body is really wanting. So at the moment I’ve just been eating sandwiches.. not the best thing ever but I’ve tried to eat soup an other stuff but I’ve just not eaten it because just the thought of eating anything other then what I am makes me feel ill..it’s all very weird an complicated. But yeah just going with what my body wants rather then fighting against it and making myself feel stressed.

Peace out

Batman

I love my friends <3

I am back, I’m feeling a bit more lively and a bit less mopey. It’s been a very long few weeks but hopefully this is the start of me feeling better.

My stomach has been loads better this week and I’ve been catching up on eating lol 🙂 but that’s good though, I needed to build myself back up again.

My friends have been really amazing this week and I am so so grateful for every single one.

On Thursday I spent the whole day with L and the pups. Harvey was at school and Albert was at nursery 🙂 so it was nice just to chill and have some adult time. We watched some films and just chilled really but, even just simple things like that makes all the difference.

L picked up Albert from nursery and I went to pick up Harvey from school 🙂 which was cool.

L cooked us all dinner too, which I needed, as I’d not eaten properly for a while.

I left just after the boys went to bed, when I got home, I got my meds, a drink, a snack, my hot water bottle and let the cats in the bedroom too and snuggled in bed with all my fur babies and I was fast asleep by 10:30 pm.

Friday I woke up at 5:30 am…but I had slept well for 7 hours. I just chilled out for a bit, hoping I would go back to sleep for a bit, but I didn’t. So I cleaned up a bit, got myself showered and dressed and by 8 am I was out with the pups, we went for a walk down Baiter. It was really nice, I saw a rainbow and got some great pictures.

On my way home I went to my friends shop and picked up her dog Lolly for a play date for the day. I did try and have a nap after my walk, I couldn’t sleep though but I did just rest for an hour.

I felt a bit restless all day long, I couldn’t settle on any one thing. But I felt ok other wise. Just spent the day pottering around the flat and playing with all the dogs and cats 🙂

I dropped lolly home in the evening and S and her family invited me up for dinner which was nice 🙂 I had nice snuggles with baby JJ and Lolly was wanting me to play too. It was nice just to chill out with friends and be looked after a lil bit ❤

I got home to my happy puppies and kitties, took the pups out for a wee and then snuggled up in bed like I did Thursday night. It was really nice not to have to inject myself and put that crap into my body! Felt nervous about it but good too.

Saturday was the first time in 15 years that I didn’t wake up with a methotrexate hangover! I didn’t feel tired and groggy, I just felt like I normally do in the morning.

I just sat watching cartoons for most of the morning, then decided to get my butt up and do the housework. Despite the rain I got my waterproofs and welly boots on and took the pups out for a walk, it was great fun 🙂

I got home and did myself some actual dinner, only scrambled eggs on toast but at least I cooked something.

Two of my lady friends took me out, we went to Flirt for the evening but it was really nice to get out with some lovely friends.

After getting home, I took the pups for a wee, took my meds and fell asleep pretty much straight away.

So we are all caught up to today, which is Sunday.

I’ve felt pretty tired all day and all I’ve done is eat, sleep and watch cartoons. I just couldn’t get going but I think where I’ve not slept well all week, it’s all caught up with me. I don’t mind spending the day the way I have done because some days I just need to sleep, rest and eat.

I am feeling so so grateful to all my friends who’ve been there for me this week 🙂 either physically or just through messages. I am feeling so much better for having my needs met from everyone, it was definitely needed. I cannot express enough have important and how much everyone has helped me, even the smallest of things has been brilliant, argh I can’t even explain what I mean lol. I am so so so grateful and I love all my friends ❤

So yeah I am back on track to feeling a bit better. I have emailed someone who knows all about my condition, who works for a charity, who will hopefully be able to help me be seen in a different hospital by an actual proper specialist. I am so excited about this, I just hope things work out!

Um so yeah, just staring at the laptop now, my brain has switched off. Not much planned tomorrow, I do need to get some bloods done, so I may go do that. We shall see how tomorrow pans out. I just can’t wait until Tues when I get paid so I can go and do something and get on with xmas shopping.

Peace out

Batman

Enough is Enough! Goodbye Methotrexate!

Quick catch up, it’s been a long week already. I’m tired and everything hurts and I just want to hibernate for winter.

My stomach has settled down now which is such a relief, although it is still a bit tender when I eat but that isn’t really surprising after what it’s been through.

I saw my GP yesterday and I was just on the edge when I saw him. He asked me why I was still on the methotrexate and I nearly lost it. I managed to hold myself together but it was a bit of a heated appointment..

I had my 1:1 appointment with my gender identity counsellor yesterday, which was good. It was hard work but I need to go through this process.

Today I’ve had a bit of a tantrum and I am outright refusing to take my methotexate any more. Well when I left a message with my doctors secretary, my doc rang me back in under 2 hours. She isn’t happy about me coming off it but she can’t stop me. I am however annoyed that she isn’t doing more to actually help me. But that is another issue. I am happy about it but nervous too as stopping straight off without coming off it slowly can be dangerous…but they have given me no choice! this isn’t the way I wanted to come off the methotrexate, I did want to do it all properly but they have backed me into a corner and yeah, I’m done! Enough is enough.

Also today I sent a message to a few close friends and completely opened up to them, made myself vulnerable, asked for help etc..yeah that was hard! But it was my goal from my therapy session, plus it was good to know that my friends actually love me 🙂 so yeah… this is really uncomfortable to even write lol.

Mood is pretty damn low because of everything going on right now. But I am going to see a friend tomorrow so I’m really looking forward to that 🙂

I am currently writing this with my kitten licking my t-shirt as usual lol. She’s so weird, she does it all the time lol, it’s mega cute though.

I’m going to get to bed, I’m so so tired.

Peace out

Batman