Chronic Illness F*cking Sucks!

Sick and tired, tired and sick….I am so fed up of getting sinus infection after sinus infection, fed up of the chronic pain, fed up of the chronic fatigue..Just totally fed up of it all. I am fed up of having doctors not listen to me…I’m fed up of being me and having this life forced upon me.

But I push through…why I don’t quite know any more but I do.

I will write more when I feel less exhausted…when that will be is anyone’s guess!

Peace out

Batman

Over did it – catch up

I’ve not posted for a week and that’s because I’ve been so busy, I haven’t really stopped until today. Its been great and I’ve been having a good time but I’ve totally over done it and I feel so awful today, so exhausted.

I’ll do a quick catch up of what I’ve been up too this week.

Wednesday – I don’t really remember much from this day as its so long as. But I remember I had to stay in for someone to come and lower my shower pole, so I can now reach it when sat on my shower stool. I rang up the RSPCA to get a voucher to get Harley Spayed and microchipped. I think I just relaxed and pottered about the flat, doing the housework and laundry.

Thursday – This day was SO long! I saw my bone doc in the morning and WOW that was a real shit appointment and I really despise her!

This was my FB status about it..

I really dislike my bone doc. She doesn’t listen and she doesn’t care! I asked for my whole condition/symptoms to be reviewed and she kept asking me what I meant… If I want my hyper mobility looked into I have to ask my gp to refer me to some genetic place in Southampton… She wasn’t really clear about this.

She’s still banging on about coming off steroids… So in a few weeks after my blood results today I get to start azathioprine and it that goes well then she wants to start lowering steroids again…

My bloods are all negative and have been for ages but it doesn’t explain my constant sinus infection, the chronic pain and fatigue…
And she just put the burst blood vessel in my finger down to steroids and again she didn’t even take a close look, she just glanced at it.
I really dislike her.

But I didn’t write that she wanted to examine me, which is fine and I am totally used to that. So I took off my jumper and jeans but she asked me to take my off so she could listen to my chest…I refused too as she can listen to my chest without me being completely undressed. She did listen to my chest with my top still on but that’s not the point, she was totally out of order. She’s knows I’m trans and she obviously has no understanding and no desire to understand. Needless to say my gender dysphoria was horrific afterwards.

After that I headed straight to group, which was cool as usual 🙂

http://www.dorsetmind.org.uk/

I went and had fuzzy hair cut an styled, so I look much better now 🙂 I always feel so good after a haircut.

Met L and Boo Boo in town for a bit and then took Boo Boo home with me. Got home, sorted out Boo’s stuff, played with him for a bit, cooked us dinner, took pups for a wee, played a bit more and then put Boo to bed. I just spent the evening relaxing and watching tv.

Friday – Albert had me up early, so we went into the lounge and I put frozen on for him and I napped on the sofa for a bit, I wasn’t ready to be up at 7 am! But after that I was totally ready and we both had breakfast, Frozen was put on for a 2nd time and then we both had a shower an got dressed.

Took the pups for a quick wee and run around, which Boo Boo had fun playing with the pups. Dropped the pups home and Boo’s pushchair and walked over to the park, where we played for about an hour. I had to then bribe him into walking to a shop I needed to go to, I said I’d buy him chocolate if he left the park.

We just chilled out in the afternoon, doing lots of colouring and watching Disney films, he really got into Tangled which is one of my favourite films. I love Disney so I didn’t mind spending all afternoon watching them with Boo.

Boo and I had dinner and it was actually nice to have dinner with someone, rather then cooking for just myself. I did have to encourage him to eat it though, as he’s two and a half now and definitely asserting his right to say no, I don’t like it! Plus his taste buds are changing too, he’s gone from eating anything to very little, although he will eat chocolate all day every day lol.

We chilled out after dinner, playing with his dinosaurs and cars. He then asked me to read his book so he could go to bed, it was so sweet. Again in the evening I just spent clearing up and then relaxing.

Saturday – Boo had me up at 7:30 am..wanting to watch Frozen again! While he was doing that I had a little sleep on the sofa, as I do not do early mornings.

Again he wanted a shower with me and when we got dressed we both had Batman t-shirts on 🙂 Took the pups for a wee and a run across the road, so Boo had fun playing with them. He’s so good with the dogs, its so cute.

Boo and I had some lunch, I got his stuff together and cleaned up a bit. Then got the bus and dropped him off with his dad’s family, as L was still really ill and needed a little more time to recover.

I went over to see L and Harvey and as soon as I walked in Harvey was showing me his minecraft and what he’s been building, which is pretty cool actually. I took Arnie around the block for a quick walk and wee.

Headed home and while I was sat on the bus I had a migraine start…and I didn’t have any sumatriptan left!! While I was walking home, through town I nipped into the chemist and bought some sumatriptan, got in and stripped off, got into my pjs, took my Tramadol and got into bed. I hate migraines so much, all I can do is sleep when I get one.

I slept for an hour, I then had dinner, got a shower, got dressed into my new fancy shirt and jeans, took the pups for a quick wee and then E picked me up for J’s birthday party.

It was such a good night, I talked to loads of new people. I even got into a club without being asked for I.D which is great as I don’t have I.D lol!

Sunday – I got up quite early considering I got to sleep quite late. Did my usual morning stuff, got me and the pups ready and got the bus over to L’s.

We spent all day there which was cool, I went out and got some food shopping, I took the pups around the block for a wee. Then chilled out for a bit as I was so achy, probably because I was really tired. Then Harvey and I took the pups down to the park for an hour, he rode his bike as he wanted to show me how well he can do it now. So that was cool just spending some time with me and him, gave L a chance to have a lil snooze. When dinner was ready I sorted it all out. Afterwards I fixed the nob on her slow cooker as she’d managed to melt it…yeah don’t ask lol!

I think I left about half 8 pm, got home and jumped in the shower, got into bed and was sound asleep by 10:40pm.

Monday – I woke up quite early, ate a packet of jaffa cakes and got back into bed until lunch time…I totally needed it. Did the housework and laundry, took the pups for a wee. Sorted out my meds for the week, sorted out my list of what’s going on for the week. Then in the evening I went to the Breakfree trans group social. Which as always was a good laugh, even if it was just the 3 of us lol.

Today – I woke up this morning and I didn’t feel good, I hurt all over, I felt weak and tired, my nose was all blocked. So I just had some breakfast and went back to bed until lunchtime.

Dragged myself into the shower, then got dressed and took the pups for a wee but it started raining, so we came back and I got into my joggy bottoms, as I was still so achy and feeling delicate. Spent the afternoon catching up with X-files and Gotham, while I went through the box of Lego Harvey gave me. Most of it was just random bits and fake Lego, so chucked that out and I was left with a handful of real Lego bits. I then decided to sort through my Lego into bags of their colours.

I did go out for a bit to get electric and to pay my rent, I needed to stretch my legs a bit. Also went to Asda chemist to re-order more meds.

Just been relaxing this evening, had dinner, ordered my food shopping and caught up with emails and stuff.

How do I feel right now? I’m exhausted, I’m achy and I do feel frustrated with all my health crap because it gets my down so much. I feel ok-ish just a bit low but nothing I can’t handle.

Tomorrow I am meeting my Nan and Grandad for the first time since I wrote “that” letter. I’m a bit nervous about it especially as I’m physically not feeling great and not on top form. I’m sure it will be ok…

The mothership text me the other day and asked if she was seeing my for my birthday (which is next week) and I just said I don’t know and she said ok. To be honest no I don’t want to see her but she’s not getting the hint. Whatever though.. she’s a stress I don’t need in my life right now. She’s a negative influence in my life, that sounds awful as she gave birth to me, but regarding me emotionally she hasn’t put an ounce of anything into me. Yes I was always, fed, clothed and had a roof over my head but my emotional needs were never met. Anyway its just a complicated situation and I don’t want her in my life.

Little Harley is booked in this Friday to get spayed and chipped 😦 got to starve her from 8 pm Thursday night. Going to miss her, she’s not been away from me since I’ve had her.

Overall I have been doing ok considering everything I deal with on a daily basis, it is a struggle and it is hard. But I keep pushing through cuz daddy didn’t raise no quitter!

As usual I do have loads of pictures but I shall do that in a separate post.

Peace out

Batman

Chronic pain and fatigue

Days like today just reinforces my limitations of daily life. Yesterday was great fun but today I could barely drag my body around. All my anger towards this illness surfaces on days like today and I’ve got to try and “deal/process” it which is incredibly hard, especially as I’ve had zero emotional support surrounding my physical health issues.

Before I carry on I’ll have a quick update about the last few days.

Sunday – Didn’t really do anything just slept a lot, I was hurting from head to toe. I did go to my brothers for a few hours for dinner, which was nice. When I got home I spent a little time on the laptop but then spent the rest of the evening playing Lego Jurassic world.

Monday – I struggled to get going in the morning, I managed to drag myself around to do the housework and have a shower. Just in time for my friend to drop her boy over, for some boy time. We took the pups out for a quick wee, went and got some biscuits and then spent the rest of the time watching cartoons 🙂 which is a morning well spent in my mind.

In the afternoon I met L and the boys, went for a short walk. It was too cold to go far. They spent the rest of the day at mine, we played with the pups, watched Frozen and did some colouring. It was so much fun, I love playing with the pups an Albert. Harvey is much harder to engage with, as all he wants to do is either play on my ps3 or play fight, which he’s starting to get far to big for now. He’s nearly 9 and getting taller and stronger, he has no interest in colouring in, or anything where you have to sit and use your imagination. I really want to find something I can get him to engage with, as otherwise I feel like he’s a bit left out. He just ends up playing by himself in his own world, but it’s such repetitive play, just the same thing over and over every single time he comes round and even when he’s at home. Its just finding something that’s not play fighting or gaming related to get him to do something else. Its really difficult because when I ask him what he wants to do, he doesn’t really know. He does have potential to do whatever he wants its just unlocking it and finding him a hobby or a different form of play. Autism is complicated, but I will not be beaten and I will get inside his lil brain to unlock him. It fascinates me so much and I really want to help get him involved when we are all playing, I want to get him included but its hard when he won’t join in.

Anyway they left about nearly an hour before I was leaving to go to my trans group social. Which was good as usual 🙂

So back to today, I woke up at 8 am had a pee and went back to sleep until half 10. I still felt really tired and so achy, as I’d ran out of Tramadol and needed to pick my prescription up from the chemist.

I barely managed to get a shower and get dressed. I dragged myself across the road to let the pups run around, I just sat on the bench watching them. I just couldn’t walk around, my whole body felt heavy and slow.

Dropped the pups home and dragged my ass down to the shop to pick up my Tramadol and got a few other bits I needed. While I was in there, I suddenly felt this weird feeling in one of my fingers, if felt like it was about to explode…it was just a burst blood vessel. So I now have a very swollen and bruised finger..urgh.

I just spent all afternoon relaxing, I did try and sleep but I just couldn’t! Which was fucking annoying, I was tired enough for a sleep but I was just in too much pain. I couldn’t get comfortable, I couldn’t relax enough 😦 stupid painsomina.

Just been binge watching things I’ve recorded on sky, whilst playing fetch with Scrappy and the laser pen with both of them, also been playing with the cats. I just sit on the floor and they all surround me 🙂 I love it. They make days like today a bit easier to deal with…well along with some cookies!

I don’t have much planned for tomorrow either, I have to wait in for someone to come and lower my shower pole for me. Its too high for me to reach when I’m sat on the stool and I can’t raise my arms above my head for too long.

I still feel extremely exhausted so another day of rest is probably a good plan. I don’t get too bored staying in these days, mainly because of the dogs but I’ve really got into gaming and all my Lego I have now. I have more hobbies and things I like to to, whereas in the past I hated being bored because I never knew what to do, I didn’t have much to do. I’m able to focus myself more now into a specific task. I hate being bored, it really effects my mood and makes it really low.

 Both my babies have bandanna’s now 😀 they look so cute!

Anyway that’s all for now, I need to rest my eyes from this screen.

Peace out

Batman

Happy, content and refreshed

The mid week slump was much needed, I was totally wiped out by Wednesday afternoon and I had to stop everything I was doing and just sleep. I think that this in part has helped with my mood, I feel good, happy and refreshed. It feels nice but a bit weird, just trying to hold onto it and not look to destroy it.

We had a really nice sunny day on Thursday, wow I felt great! So energised and happy. Even my neighbour said I look really refreshed.

It was the first day of wearing my sports bra all day and that also contributed to my good mood. It hurt like hell at the end of the day, my ribs an back ached so so much! But it was worth it, I felt great! I’m not going to wear it all day every day, will have to build up to it. Plus as its cold I can get away with wearing hoodies so my chest looks less noticeable.

Group was good on Thursday, M and I agreed that I could use the group as I did before, whilst also being a volunteer. Which is great because I get to help but also continue getting support, its a good balance.

M dropped me home, which cut loads of time of my usual journey. I got home, threw my bag on the floor, peed and grabbed the dogs and went for a walk down Baiter. It was so nice and the pups loved it, we caught the sunset which was so beautiful ❤

I was glad to have dinner already made, I just had to heat it up. I was achy and tired after walking the pups but I felt happy, I love being out with them and it was definitely worth the pain! I then played Lego Jurassic world for the rest of the evening. I’m cutting down the amount of time I spend online, just because I see so much crap on social media and it does have a negative effect on me. Plus playing my games or doing Lego feels much more productive and it makes me feel loads better then surfing the web all night.

Friday M and I went to the Weymouth group, the group met for lunch before hand and it was really nice. I couldn’t eat my lunch any quicker lol, it was so yum! The session itself went well, I really enjoy this group. M and I had quite a deep chat on the way home, which is unusual for us, it’s usually quite light and funny. But it was good though and very much appreciated.

I got in and took the dogs straight across the road for a run, I met my sister in law to pick up Leo for a few hours. They both needed a few hours without a screaming child lol…so I got him! He was tired and teething, after he played with scrappy for a bit I managed to get him off to sleep in his pushchair for an hour, so I could eat and relax.

I ate loads today, I had 3 crumpets and 2 pancakes for breakfast, I had a jacket potato for lunch, then biscuits and I had more crumpets and pancakes for dinner. Its the first day in so long that I’ve felt really hungry and have snacked between meals and I ate without even thinking about it and without it being such a huge stress.

After they picked up my lil chubs and robbed all my sweets lol! As they always do when they come over, but I hide the good stuff!! I played Lego Jurassic world for a few hours, I got sucked into and away from my head. I love it so much 🙂 makes me feel like I’ve accomplished something. I’ve never completed a game 100% before, so I’m already half way through now 53% 🙂

I got to bed and sleep just after 1 am I think. I woke up at 9 am, had breakfast and went back to sleep until midday 🙂 I felt nice and refreshed, ready for another day.

Did the housework, had a shower and got dressed. Not wearing my sports bra today though, my chest bones are still recovering from wearing it all day Thursday.

Took the pups across the road for a run and wee, before walking through to high street to the bus stop. Its a Saturday so it will be busy and the last thing I need is for them to stop and poop in the street lol! Because they are small people don’t see them, I don’t like walking through the high street on a Saturday let alone with the dogs.

I took the pups to their vets appointment, just for flea treatment but I prefer to have an appointment so I remember when they are due what treatment. Mr Scrappy has put on 200gs, he’s now 6.7kgs! She said he should maximum weight now as he’s nearly 2 years old and should be finished growing. She’s happy that they are both happy and healthy and that now for a while Foxy has been maintaining her weight, rather it then dropping up and down all the time. I think a better quality of food has helped so much with her in so many aspects 🙂

I got home and chilled out for a bit, I then sat and played Lego Jurassic world for a bit, going round collecting more Amber and gold bricks. Had myself some dinner, I had gammon that I’d made on a previous night, which was nice.

I spent some time making some cakes and cheese biscuits, which I always enjoy. I’m going to my brothers for dinner tomorrow, so will take some of each with me.

Spent the rest of the evening catching up on online, social media stuff and writing my blog of course.

How do I feel right now? I feel happy, content and refreshed. I can’t put my finger on why, its probably to do with a few things. But I’m not going to analyse it, I’m just going to enjoy it and hope it lasts.

Here are some pictures from the last few days.

 Pups loved their walk on Thursday and didn’t want to go home.

 Foxy taking in her surroundings ❤ she looks so peaceful and happy

 Typical pose for my boy, willing that ball to move lol.

 Foxy in her pjs, chowing down on treats 🙂

 My gorgeous boy didn’t want me to leave him.

 The view from the room for out Weymouth LGBT mental health group.

 Eating the last cookie, whilst waiting for M to pee before we left. I was feeling pretty goofy 🙂

 Pups all ready for bed, they are such lil posers.

 Marley moo loves sleeping in bed with me

 Harley checking out what everyone was doing.

 Home made cakes are the best!

 Home made cheese biscuits are the best!

 The pups waiting for anything to drop on the floor lol

 Harley checking out what’s going on as usual.

That’s it for now, will be around again soon.

Peace out

Batman

Mid week slump

Mid week and I am totally wiped out and I don’t really know where to start what to say as usual.

It’s been a pretty busy 3 days and I feel quite overwhelmed with everything. I started out strong on Monday with phone calls etc to sort things out…but yeah now I just have no energy to chase it up and sort things out. Maybe I’ll try again next Monday when I feel up to it, I just can’t right now its all a bit too much.

I had the nurse Mon afternoon and she gave me a nose spray to help clear up my sinuses. She couldn’t print off my prescription, she had to hand write it and when I asked at reception she said it was because they are waiting for my new NHS number 🙂 This makes me well happy, just can’t wait for it to be sorted.

After my counselling on Tuesday I went shopping, I needed a new jeans and shirt for my friends birthday party next week. I got myself some bootcut jeans that gives me a much less scruffy look and a nice shirt. I went to sports direct to again look at sports bra’s and I tried on one, this time I didn’t get stuck in it…last time I tried one on it was a bit of a disaster. Anyway this time it went well and it fit nicely and it flattened my chest well enough that makes me happy.

So I’ll talk a bit about chest binding… Trans guys bind their chests to look more male before they are able to get surgery to remove them. I myself have sensory issues with many different things especially with clothing so for me binding my chest has been extremely difficult. The binders I’ve bought are chunky, thick and the material is just not nice and I would totally over heat in them. So this sports bra is high intensity, so it holds everything down enough to make me look a bit more passable. The material is nice and not too thick and chunky, so I don’t see myself getting any hotter then usual in the summer. Its just as tight as a binder and it is quite hard to breathe with the sports bra on but I can’t get away from that, it needs to be tight in order to flatten my chest down. I can’t wear it all day long though as its not good too. But yeah I’m proper happy now I don’t have to stress about the summer and binding and stuff.

Today I had a few jobs to do and I did do most of them but then it got to lunch time and I just couldn’t go or do another single thing. I just had to sleep, I was so exhausted and in so much pain from head to toe.

I managed to do the housework, laundry, took the pups for a quick wee and run. Then went up to the hospital to drop off a sputum sample and get my bloods done, by the time that was all done I was done.. literally could barely move. When I got home I stripped off and got back into my pjs and got into bed and I slept for nearly 3 hours. I just hope I sleep well tonight as Sun and Mon night I struggled to sleep right through the night, without getting up and down 3-4 times.

I hate sleeping so much in the day and having to rearrange things, just because I’m tired and in pain. I just want a regular life… 😦 I have no choice over this which is the most frustrating part of this stupid invisible illness. I have no control over it either, it just happens to me. I feel like I’m not in control of vessel that I happen to be in.

I could talk forever about how my illnesses effect me because they are a huge part of me and it changes how I live my life. I also hold a lot of anger and resentment towards my illnesses.

How do I feel right now? I’m tired, overwhelmed but I’m ok, just trying to take it easy and go with how my body is feeling. After writing this I’m going to spend some time playing with the pups and cats.

That’s all for right now, got the Bournemouth Mindout group tomorrow and the Weymouth Mindout group on Friday, really looking forward to both groups as always 🙂

http://www.dorsetmind.org.uk/

Peace out

Batman

Tired and achy but feeling happy

Right now I’m too tired to write but I am too tired to move and do anything else… I’m just glad I got through another stressful week with minimal damage.

I’m still not feeling any better then I felt on Thursday, still exhausted, achy, snotty and chesty. I can’t wait to see the nurse tomorrow and get some antibiotics for a bit of relief.

Today my arm and hand that I fractured last year has been so achy today, my thumb is the worst it proper hurts. May need to wear the splint for a bit as a bit of support. But I’ll talk to the nurse about it tomorrow.

Friday I spent relaxing and looking after my needs, which I totally needed. I took the pups out for a walk, it was windy and raining but it was actually quite nice. Not one single person was down where we walked, felt like the only person in the world. Loved feeling the wind and rain on my face, made me feel alive. The pups needed a good run around as they’d not been out since last weekend. After I just spent some time watching TV and then played on the PS3 until dinner. I had gammon for dinner with dumplings and veg, it was so nice and even though my appetite is better I’ve not put on any weight, so I’m well happy with that, I’m still 8st 13lbs.

Saturday L and boo came over and spent the day and mine. It was a good day, me and boo played with trains and cars. We did try and go for a walk but it was so so windy down there and boo was tired so we didn’t go far. Boo fell asleep before we got home, so L and I watched Legend and I made more cheese biscuits mmmmmmm 🙂

After they left I had a little sleep because I was tired and in pain. I made myself dinner and played on the PS3 for about 4 hours, which I love so much.

Today I struggled to get going, I was so tired and felt rough. Still wanted to go out and do something though, hate sitting about even when I do feel ill.

My friend F picked up me and the pups and we went to the beach for a walk. Again it was really windy but at least it was dry and the pups had great fun running around going all crazy.

F and Benny came back to mine for a bit, which was nice. I changed into my joggy bottoms and sat and the floor and Benny kept rubbing himself all over me lol, he’s so sweet and didn’t leave my side bless him.

After they left I chilled out for a bit and eventually I just couldn’t stay awake any longer and fell asleep for about a hour. Cooked myself another nice dinner again tonight, so chuffed that I got my eating back on track quite quickly.

How do I feel right now? Like previous posts, I feel tired, achy and not too well. But my mood has improved and I feel happier then I have done this week. That’s down to seeing my friends, taking the pups out, eating properly, resting and sleeping, oh and playing my games on the PS3 🙂

It’s been a hell of a few weeks and it’s totally mashed my head up, loads of things have been churned up by this benefits process and my continuing counselling etc. But as usual with the help of my friends I’ve managed to pick myself and carry on. Sometimes I wonder how/why I carry on but I do, life is precious and some people don’t have the choice of living their life. But I do and I choose to carry on and live it as best as I can.

 This is how I feel

 Scrappy at Baiter on Friday

 A wind swept Foxy

 Pups chasing each other

 Boo didn’t like the wind

 Playing with trains 🙂

 Muscle boys!

 Selfie 🙂

 Aw selfie ❤

 Pups down the beach

 Another wind swept Foxy running on the beach

 Scrappy loving the beach

 I love the beach in the winter.

Peace out

Batman

I hate this broken body of mine

Where to start? I don’t even know right now, I’m tired as usual and not feeling too well again. I’m so fed up of this, I just want to feel better for a little bit.

Woke up today feeling even worse then I did yesterday, everything hurt from head to toe and still does now. My chest felt/feels tight but inhalers haven’t helped.

I took nearly an hour just to get showered and dressed because I kept having to sit and rest in between doing anything.

Despite feeling ill and exhausted, I managed to get myself out and on a bus to group (Mindout LGBT mental health group) http://www.dorsetmind.org.uk/

I’m glad I went, it was a good group and I found it helpful to vent all the stresses that are in my life right now, which is quite a few. I also sorted out taking subs and helped someone with some forms we were filling out. Which made me feel capable, useful and helpful and like I have a purpose, well at least for a bit.

Group took it out of me though, by the time I got home my head was pounding, my ears were hurting and just every inch of me hurt. I took some sumatriptan to help with my head, I couldn’t take anything else for my joint pain.

I took the pups across the road for 10 mins and took a ball over to play with scrappy 🙂 He loves playing fetch so much and it makes me happy watching him play and my little princess foxy just tags along trying to catch up with her brother. I love these two so so much and I am hoping to feel well enough to take them for a proper walk tomorrow, as I’ve not been able to take them out for a proper walk for about a week now, so they need one.

So glad I had dinner already made, so just had to microwave it. A day like today is why I have dinners ready made, because I just don’t have the energy to cook, even with my stool in the kitchen.

Haven’t done much this evening, just been relaxing and resting. I did paint two more boxes, one purple and one with a green base that’s going to have blue sides, so it looks like outdoors. I have a new mini figure of a janitor guy with a mop, so I am going to place him on my kitchen floor, with a spot of green paint to look like sick, gross I know lol! But it’s funny 🙂 need to do it tomorrow as the lighting in here is rubbish at night.

How do I feel right now? Tired, poorly and stressing about several things. Most things are out of my control right now so I’m trying to put them to the back of my mind and sort out the things that are in my control.

One of my stressors is the gender dysphoria, my main issue being not being able to bind my chest. Next week when I get paid I’m going to look one some sites and order myself a high intensity sports bra, in hope that will flatten my chest enough for me to feel passable.

In the summer I overheat really quickly, so I need to wear vest tops and shorts. So my chest needs to look less female in order for me to be myself and for me to feel comfortable in myself as well.

I wish I could unzip this body suit I have on because it’s the wrong body suit! with the wrong parts. I hate this so much! It’s frustrating because I can’t change anything right now.

Do you ever feel like a child? I do all the time, I feel like I am stuck at the age of 15 and I can’t seem to move on. It was the age I was diagnosed with Granulomatosis with Polyangiitis, the age my life stopped. Well that’s how it makes me feel anyway, I was really ill before my diagnosis but without a name it was easier to ignore.

I feel stuck, like emotionally stuck at this age and although I have progressed and I have moved on in many aspects of my life. But when it comes to being ill or whatever I go into child mode and it causes a lot of pain and anger. The anger almost becomes uncontrollable, I can feel it inside but there’s nothing I can do about it.

From head to toe, inside and out I despise my body. It has the wrong parts and nothing fucking works properly. I hurt every day, I’m tired every day, I’m ill all the time. Even my mind doesn’t work properly, I can’t and don’t trust any part of me to do its job properly.

I’ve never had any help with dealing with coming to terms in living with a long term illness with no cure. There’s still nothing out there, no help nothing.

Anyway..whatever I’m exhausted, well even more so. I better get this broken body to bed.

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

Beyond Exhausted

It’s only Monday and I’ve got a good feeling about this week and about the “stuff” going on in my life 🙂

I really struggled to get going this morning, I felt so so tired and felt like I hadn’t slept at all even though I’d had a really good nights sleep.

The flat was an absolute state and I really needed to get the housework done, not only because I wanted it done but someone was coming over to help me with my PIP appeal.

I literally had to drag myself around the flat to tidy up bit by bit and it took every ounce of the little energy I had to sort it out.

I then used my last bit of energy to have a shower and get dressed. I also took the pups out for a quick wee and a run, how I made it over the road and back I don’t know. I was running on empty by this point.

Hate feeling this exhausted, it makes me feel so weak and everything is so much more of an effort to do anything at all. Its almost like I’m carrying a person on my back and someone holding on to my ankles holding me back from walking. It makes me feel so dragged down, its really hard to explain to someone who’s never experienced it. All I want to do when I feel like that is sleep and all I can do when I feel like that is sleep.

Sadly I couldn’t sleep right away, as I had a lady come over to help me sort out my appeal for my PIP (personal independent payment) She was really nice and we spent nearly two hours talking about my conditions. She said they that I should have been given a point for having a pill box! Not that it would have made much of a difference BUT it’s utterly disgusting that they did not write that down. Most things I said they didn’t write down.

Anyway she seemed quite hopeful about my chances and she thinks that if my docs write me some good letters that it shouldn’t go further then a mandatory reconsideration, which should take about 6 weeks-ish. I am really hoping that it doesn’t have to go further then this but I will be ready just in case I have to fight it further.

She said I have a strong case for the care component part of the claim but the mobility component part of the claim maybe a bit trickier purely because I’m not in a wheelchair and it’s hard to judge me pain, how far I can walk etc. But she said there is something I can do to help that part, which is to measure my step and then count how many steps I can take before I am in pain and or have to stop and do that for say 3 different days in a week and then she can do the maths and work out an average of how far I can walk and hopefully that will be enough to help with that part of the claim.

At one point we were talking about who cares for me, e.g a social worker..etc and I said no one and that’s not because I don’t want/need that kind of support but because it’s simply not available. I had a social worker, she saw me once and that was only to get my stool for my kitchen stool and shower stool. All the services are over stretched and have no time for people like me who appear to be capable or whatever. But I have to deal with my life by myself because I have no other choice, it’s such a catch 22 situation. It just highlights to me that I do have a lot of needs that are being met because I put an extraordinary amount of energy into every aspect of my life. But I do wish I had a social worker or whoever to help me with appointments, or sorting medications or just to talk too. I know that this kind of support would be invaluable for me, it’s just simply not available and people like me are slipping through the net and aren’t getting what they need and it’s so so sad to thing there are others like me suffering because of the lack of services.

Appointments like this always bring up so much for me and makes me think about my illnesses and how much it effects my life and it doesn’t make me feel good. I hate this illness so much but I wouldn’t wish it upon anyone…I won’t go on too much as I don’t want it to effect my mood any more then it already has.

Anyway the lady left just before 2 pm and I had just about enough energy to let her out and then collapsed into bed, where I slept until 4 pm…yeah I wasn’t tired at all..and I’m totally fit for work! lol

My friend H popped over for a bit to kill some time before an appointment, so that was nice to catch up with her for a bit.

I managed to eat dinner tonight, I had rice and my beef stroganoff and I managed to eat the majority of it as well. So pleased I could eat properly and hopefully I will be able to continue to eat well again. Tomorrow I’m making sausage and bean casserole in the slow cooker 🙂 so looking forward to that.

Went to the chemist this evening to pick up some medications that I had ordered last week. But my meds weren’t ready, usually when this happens it really annoys me because it’s either a cock up caused by the chemist or the doctors. Today however was different because no one has messed anything up, so the lady explained that my doctors surgery had said that they had taken me off their system and are in the process of putting my details back onto the system. The lady was a bit confused as to why they were doing it and why I was pretty much bouncing up and down lol! This means they are FINALLY changing my title and my gender and I will get a new NHS number, it’s only taken them nearly a year to sort this out. But that’s irrelevant now as it’s being done.

I cannot express how happy this has made me, even though its a pretty minor detail in the grand scheme of things. But because I am in a sort of limbo while I’m waiting to be seen at the gender clinic and I’ve had to fight for this as well, so it feels like a small victory! So yeah I am a very happy boy right now 🙂

How do I feel right now? I feel tired, I feel happy and I feel relived as well. I just hope everything with my benefits goes in my favour and it doesn’t take too long.

 I woke up to this after my nap ❤ aw they are so cute ❤ Miss Marley moo and Foxy girl.

Right I gotta get myself ready for bed, I need my beauty sleep lol.

Peace out

Batman