trauma – Parts work

I posted last week I think about childhood trauma, but I missed a big chunk out. I didn’t come to mind at the time, but as I’ve mentioned before my memory has huge chunks missing and things that aren’t in order and that’s got much worse over the years and I think that’s mainly cuz I’ve been getting closer to the source of the trauma, maybe its ready to start healing. Finally.

So when I was about 7 years old I started getting ill (I’m not sure if that age is accurate, but I know I was in first school) I think it started with asthma like symptoms and in fact I ended up having a asthma attack as all my x-rays would come back clear and I have the same issue now, I can have a chest infection and doc’s can never really hear anything until I cough. So In was treated for asthma, I then started having nosebleeds that would last for what felt like hours at a time and because I was young and the shape of my nose wasn’t right they would never cauterise my nose to stop the bleed. It then progressed to joint pain and fatigue but as was young most doctors didn’t really know what was wrong with me.

By the time it came to the year 2000, which was the year after my parents divorce (I think) I was diagnosed with an auto immune disorder, for which I was given heavy medications and their side effects were just as brutal as my illness itself. I was given no support for my mental health, I was given no extra support at school even though I had to take a lot of time off. I was given this huge life changing condition and I just had to manage it myself and that wasn’t easy.

At school I was always different, always the outsider and dealing with a auto immune disorder, did me no favours. I was already struggling with my mental health and this only impacted on it. I thought my life was over, what I wanted to do with my life was taken away from me, well I had no clue what I wanted to do with my life, but now everything seemed pointless. I’d already given up on my life at that point and to be honest I feel the same way, just a ghost going through the motions until I die. (PSA No I am not suicidal, just tired of existing, wanting this pain to end, not to be dead)

Childhood/teenage years are pivotal for the person you grown into as an adult and some who suffer trauma in those years can because stuck there, or parts of your inner system can become stuck in a certain mode as a way to protect that child.

I have been reading about ‘parts work’ or internal family systems model and holy shit did my protective child go crazy when I read about the protective child, why they are formed and how they can be changed to be more in balance. I felt physically weird reading that part, I definitely disassociated, felt itchy and uncomfortable and had to stop reading, so I could get up and move around. I ended up having to do something else as my protective child wasn’t ready to be reading that stuff, especially as its only been in the last week that I’ve verbalised to another human that yo this trauma is the source of this pain that isn’t shifting no matter what I do, I need to heal this pain first.

But I know that this protective child is protecting not just me but other deeply hidden pains and I know that this is going to take a while to work through and its not going to be easy or comfortable but I want to heal properly now, I think I’m finally ready to be vulnerable enough to dig through this pain and trauma that’s trapped within. I want to feel more balanced, I want to feel happy, I want to let this stuff go. I want to be able to fully accept myself and I want to self to take its place, I want to stop coming from a place of hurt and self preservation because that’s not helping me.

I want to stop hurting, because its getting to hard to keep carrying on my own. The load is too heavy now, I only end up bleeding on everyone, that’s why I can’t break into any friend circles, I don’t want to be alone anymore.

But for now at least I know that 95% of the time protective child fronts to protect me from the world because that’s what he’s had to do for so long. I wish I could hold that little kid and tell him its going to ok, those nights I would cry in bed at night, all alone. I’d never let myself be emotional or cry in front of anyone, I’d hold it in until I was alone. I do the same now, I could do with a hug now, someone to tell me I’m going to be ok.

I may not be where I want to be, or where I think I should be, but I’m finally starting to understand myself a little better. It’s never too late right?!

Peace out

Zak

Living with cHRONIC iLLNESS

Last week I had had to wear a blood pressure monitor for 24 hours, which went well. It didn’t bother me at all during the night.

Monday my GP rang me to discuss the results and they weren’t great. He said my blood pressure was higher at night when I was asleep, which isn’t good as your blood pressure is meant to be lower when you sleep and slowly rise as your body wakes up. Due to all the medications I am on and all my health conditions and the fact I am under 40 (only for another 5 years lol) he’s going to refer me to a cardiologist, to get advice about medications and the check that there’s nothing more serious going on.

He prescribed me Amlodipine to hopefully reduce my blood pressure in the meantime and I’ve got to continue to take my blood pressure everyday.

Hopefully the new medications will help and there’s no underlying reasons for my blood pressure being so high. I really don’t need anymore health problems right now.

Peace out

Zak

Living with a Chronic illness – Hospital appointments

There are some things that came part and parcel with having a chronic illness and one of those things is having lots of hospital and doctors appointments.

I have a good GP whom which I get on well with, along with the nurses who I do my testosterone shot for me. I also have a good relationship with my Rheumatologist and his nurses and my Ears, Nose and Throat doctor. Usually I don’t find appointments too difficult as I always feel involved in my care and generally feel listened too and well looked after.

But yesterday’s appointment with a Rhematologist was the an absolute disaster. It provoked huge anxiety and anger. It was NOT a good appointment.

So I had made my way to my appointment, now if my Rheumatologist is busy, I will see one of his two nurses, who are both really lovely and I am more then happy to see. So I’m used to seeing one of those 3 people.

However when I turned up for my appointment, a nurse called me in to do my blood pressure and weight, she also needed me to do a pee sample. But she said that Dr Hopkins will see me soon… I asked who he was and why I was seeing him as he’s not my doctor. She couldn’t answer me.

It put me right on edge, it made me incredibly anxious and I wanted to leave. I then couldn’t do a pee sample as I was too tense, it was noisy in the waiting room, there was more people then usual there, which didn’t help with my anxiety.

I heard my Doctors voice, the one I usually see and I saw both of his nurses, who I see if Dr Marks is busy. In fact I spoke with Phoebe and she said I wasn’t on her list so I must be seeing Carole.

This wasn’t the case, I was led into see Dr Hopkins. At this point my anxiety was so high, I struggled to concentrate. He basically talked at me, he didn’t listen, he talked over me when I did try to speak, he didn’t involve me in the plan of tapering off my steroids, he basically told me what I had to do. This for some reason really triggered rage within me.

I held myself together as best I could but I was so enraged. How dare this person just bark orders at me, the guy doesn’t know, he’s never met me before, yet he was like well do it like this.

I walked to the train station as I need to get back for my counselling session, when I got to the station I rang the hospital as I needed to vocalise what had happened and how I felt and I wanted answers and to why the fuck I saw a random doctor and I also let it known that I did NOT want to see this fucking guy again.

The person I said to said some one would call me back, but as of yet I’ve heard nothing, so I will chase it up next week.

I think I was so triggered because it was an unexpected change and no one explained to me why I was seeing this guy, when my usual team where there. I also fucking hate not being listened too, I hate not being heard, it makes me feel so small and angry. I’ve spent a lot of time not being given the respect of being listened too. We all want to be heard and listened too. I also hate being told what I need to do regarding my own health and what I need to do with my medications. I’ve been ill all my life, I’ve been on medications for most of my life and I know my body better then any doctor ever will. I was more then happy to try and taper off my steroids again, but I didn’t agree with the way he wanted me to do it and I want to wait until at least March, as I’ve been really struggling lately as the weather has been so damp and cold, it’s just not the right time to start reducing my steroids.

The whole appointment was almost like a power struggle, he had all the power and wasn’t willing to listen about what I wanted to do regarding my steroids as I didn’t agree with his suggestion. I felt powerless, so ended up just agreeing with whatever he said so I could leave.

I will not be tapering my steroids like he suggested, I will get down to the bottom as to why I saw this guy and I will push to see someone from MY team soon and I will make it very clear that I do not want to see this doctor ever again.

Advocating for myself is something I really used to suck at, but as I’ve got older I won’t tolerate shit like this and I will let it be known. It’s fucking exhausting constantly advocating for myself and making sure I am being heard and that I am getting the care I need and deserve.

Note to any Doctors or nurses who maybe reading this, your patients know their bodies better then you do, especially those living with a chronic illness. Listen to your patients, they are the experts of their illnesses, you may have qualifications but they live it every fucking day! They know what works and what doesn’t, they know how they feel.

As much as I’m not always connected to my body, I know my body better then anyone else, I don’t think sometimes Doctors understand and respect that. I know its something my usual team of doctors understand, but this guy certainly didn’t.

It took me the rest of Wednesday to calm down, I’m glad I had a counselling session that afternoon, so I could let off steam and talk through it. It was quite funny as my counsellor had out some tuning forks which she used near me and she was like woah your body is having non of this and asked me if I was feeling angry and I was like I am furious. It was nice to have a safe place to express myself and my feelings.

I am feeling a bit calmer now about it all but I know its something that I will ruminate on now for a while. It’s hard not too when something provokes such a huge emotional reaction. I’ll get over it eventually.

Peace out

Zak

Living with a chronic illness

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

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

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

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

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

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

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

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

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

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

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

Peace out

Zak

Food diary – Update

I’ve not written for a few weeks, for various reasons. So I thought I would explain why and I think it would be helpful to me to write it down.

So I didn’t write last week because I was really struggling with binge eating and I think that was mainly down to my low mood. I just couldn’t stop it, usually I can recognise what I am doing and be mindful of it so I can stop. But I knew I was binge eating but I just couldn’t get on top of it like I usually do, for whatever reason. I just wasn’t in the mood to try a new food, the thought of it was stressing me out, however I am proud that I did try 5 new foods so far and I will continue. Maybe a weekly was a bit too challenging, as I am really realising I have such a bad relationship with food and I need to change my eating habits slowly and I think I maybe need to address the emotional side of poor relationship with food as well as trying new foods.

However this week I’ve been so poorly with a really bad sinus infection and it really knocked my appetite, mainly because I’ve been coughing so much and eating anything made me feel sick. I also just didn’t have the energy to even make a sandwich, let alone a meal. The plus side of this is that it has completely stopped my binge eating and I lost 4lbs and feel much better for it. Yesterday and today I ate dinner and have not as of yet ate more then I’ve needed. So I am hoping this short period has helped me get on top of the binge eating and get back into eating when I need to eat rather then eating all around the clock. But I’ve been put on a high dose of steroids, 40 mgs which can cause insomnia…check! and increase of appetite…which luckily as of yet I am being very mindful of what is going in my gob and I’ve not felt the increase of appetite…yet lol, there’s still time and if I do I’ll probably end up back in the cycle of binge eating but I’m going to try and be mindful and not just mindlessly eat without thinking. The mindless eating is my biggest pitfall and easy to get stuck in.

I managed to attend a LGBT mental health group I volunteer at today. It was so so great to be around humans! I’ve been by myself for most of the week and I’ve been really lonely, which is absolutely the worst when I’m poorly and not up to doing anything. Group definitely helped to just lift me, lift my mood and my spirit. I genuinely feel good and happy, I haven’t felt like this in a while.

Anyway, I’ll post again at some point, it may not be a food diary but I think I might update about life in general as it is at the moment.

Peace out

Batman

Auto immune disorders suck!

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

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

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

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

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

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

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

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

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

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

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

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

Peace out

Batman

Catching up again – Staying afloat

Once again its been about a month since I’ve written anything, it feels much longer though. I am going to try and write more regularly this month and hopefully I’ll get back into the swing of it again. I really enjoy writing and I’ve missed it but I haven’t had much to blog about really as nothing much has changed, I’m kinda just stuck right now, nothing has really changed, nothing has moved forward, I’m just still waiting and its all out of my hands, there’s nothing I can do. Its frustrating but it is what it is I suppose.

I’ll get the B word out of the way… Benefits, PIP. I am still waiting for a court date and it should be around September when I get an appointment through. So that’s that… this has been going on since, September 2015! I am absolutely disgusted by this entire process and to know I am not the only one going through this makes it worse, because I know I am strong enough to deal with whatever life throws at me, but there are those that aren’t as strong and have killed themselves as a result of being deemed fit to work. My heart hurts for those people… I’ll end it there or I will just keep writing.

So gender clinic and gender stuff – I wrote Charing Cross a letter with my new NHS number and I asked if I was going to be seen soon. I’ve not heard anything back yet..that doesn’t overly surprise me. My referral was done last July and the then waiting list was 13months so I will hopefully get an appointment next month! Fingers, toes and tits crossed everyone!

I have totally given up on binding, I simply can’t do it. I’ve tried 2 different brands of binders and a high intensity sports bra, they all worked great but I can’t deal with how they feel, the tightness, the material, the fact they make me hot and they hurt. It’s all just too much and I can’t deal with it, it makes me feel weird just writing about it. It fucking sucks! It makes me feel like shit, just a daily reminder that I’m not even close to being who I feel on the inside. While I am out and on the phone, I get misgendered and it feels like being stabbed in the heart, it makes me not want to go out and do things, it makes so fucking self conscious. I already have anxiety about talking on the phone but this makes it even fucking worse. I feel safe at home and I’ve noticed this year I haven’t done half of the things I did by this time last year. Most of this is down to my physical health being awful but even on the days I feel well, I just don’t want to go out and face the world because the world doesn’t see me the way I feel inside and its hard. So I have been hiding away more then I usually do and if I do go out, its with people I feel safe with and to places I feel safe to go. I get more excited at the prospect of staying in and doing my own thing then going out and doing stuff… But it is a fine balance of staying at home feeling safe and completely isolating myself, which is difficult. I think staying in and feeling safe is the most important thing for my mental health at the moment, I need to keep myself safe.

Physical health stuff – I saw my Thoracic medicine doc last month and he’s happy with my breathing test results, as they have remained unchanged for a long time, so he’s discharged me. But I can be referred back if I need to be. I am happy with this, its one less appointment to go too. He looked at my CT scan of my sinuses and my left side is so inflamed and the inflammation is just less then a inch from behind my eye, which explains why I get a lot of headaches and why that side of my head always hurts so much. I see my ENT doc this month, so I will be able to discuss more with him about my awful sinus pain etc and hopefully we’ll be able to come up with something that will be able to help it. I don’t even know what the options would be to make this better, right now I’d say yes to whatever he suggests.

The Gabapentin is going well, I have put on 10lbs which really bothered me at first but I don’t care anymore. I have gone past the stage of feeling the need to eat all the time, so my appetite has returned to being somewhat normal again. I am sure the weight will fall back off again. Coming off the Tramadol is going well, I am now down to 5 tablets a day down from 8 a day. It’s been really hard, as it caused insomnia the start with and it made me clench my jaw so hard it gave me migraines. That’s all starting to get better now, the insomnia is a lot better. I’m not waking up several times a night and I am actually sleeping right through, I am loving being able to sleep all night again. The jaw thing is ok now most days but if I don’t take my Tramadol right on time, then I really start clenching my jaw and it hurts so bad but its out of my control, I try and stop doing it when I notice it happening but it doesn’t work. Overall I am pretty happy with how this med change has gone so far and I am hoping that the Gabapentin continues to work well on its own.

The practice manager at my doctors surgery is still on the case to get hold of my notes, from the mythical place they go to when you change your gender lol. I hope this is sorted soon.

My knee has been alright since the steroid injection and I think the Gabapentin has helped as well. My over all pain levels have been far more manageable on the Gabapentin, well as long as I’m not doing a lot.. As soon as I do “normal” daily life stuff and social stuff, I ache a lot and the fatigue kicks in.

So that’s me really, still feel like an anxious, emotional wreck. I don’t know how I keep going but I do, somehow. I just keep trying to find the little bits of positivity in every day and every situation I come across.

I’ll wrap this up now,

I’ll try post again soon.

Peace out

Batman

Forever waiting – Massive catch up

Again it’s been just over a month since I last wrote anything about my exciting life lol, I’ve been struggling to write at the moment because my life is in a bit of a limbo and the benefits saga seems to be over shadowing everything else and the other stuff seems to be a lot of inconvenient bullshit, that occurs on a regular basis it seems at the moment. But like I said the benefits saga is the main concern and looks like it will be that way for another 3 months.

Whilst I am on the subject of benefits I may as well do a proper update of this ridiculous situation. So in my last post I said that the courts had gotten the appeal with all the information I sent and they were waiting to hear from the Department of Work and Pensions. It’s now 5 weeks later and I rang the courts up last week to see what was going on and they said it can take up to 12-17 weeks for a court date and I am on week 5, so I’ve possibly got to wait another 12 weeks or 3 months which makes it sound longer, just for a court date. September should be when I get a date but fuck knows when the date will be for, probably for 3 months after that, by September it will be 7 months since my money stopped but it all started back last September, when I got the form to fill out, December I had my face to face assessment, January they said no, February I did the mandatory reconsideration, last month I appealed that… and here I am yet again waiting. If I get a court date by September then it will be a year since this whole thing started and to be honest I’m surprised I’ve got through without self harming because it has been incredibly stressful, soul destroying and just utterly horrific. Having to do the appeals and write down all the things I cannot do or that I struggle to do, it has totally destroyed any confidence or self esteem I had about myself and has knocked me to the floor and I’ve been struggling to pick myself back up again. When I read the statistics about the people who have killed themselves because they’ve been deemed fit to work and are no longer entitled to disability benefits, I totally fucking understand why! I totally get it! I have felt so close to the edge and I’ve wanted to end it all several fucking times because I felt like I could just not do this any more. It does make you question the fact of well am I fit to work? Am I really this ill? Is it all just in my head? Even though the rational part of you knows you are ill and you are entitled to the benefits. It’s horrible questioning you’re entire life, whilst having to prove it to others who simply have no fucking clue. Right now this isn’t living it’s existing and everyone is entitled to a decent quality of life. I’m lucky that I have a few good friends who’ve helped me out with money, emotional support, love and just everything a great friendship is made of and I’m lucky to live in such a beautiful place, where I can sit by the water with my dogs just a stones throw from my house.

That nicely brings me onto the rest of my life and what I’ve been up too. I don’t feel like I’ve done a lot really and that’s mainly because everything I do something I have to then spend time recovering from it, which is frustrating to say the least because someone of my age shouldn’t have to rest and recover from activities that most people do without thinking. I’ve spent a lot of time with L and the boys either being here at mine or being at their place and as always its a good laugh but so exhausting, I honestly don’t know how she does it with all her problems too, big respect to her. L dyed my Mohawk blue 😀 and yeah it looks so awesome! I’ve also been regularly going to my groups and counselling, which at times has been hard because I have been so unmotivated and just so low but I’ve pushed myself through it all. Like I previously said I live a stones throw away from the sea and its such a beautiful place, when the weather is nice I could just stay out there forever. I’ve just been trying to maintain some sort of normality, which includes the odd treat for myself and the animals, its been the very rare occasion but I think we all to often forget the power of treating/pampering yourself has, whether it be ice cream, a facial, a holiday or a Lego set. Treating yourself isn’t something you should be ashamed of or guilty about, because lets face it no matter what walk of life you are from, life gets fucking hard and whoever you are, you should have enough self respect to say YES I deserve this. Yes I am on benefits but does it mean I am less worthy to treat myself then someone who works hard for their money? No! that’s what the media wants you to think with all there shit fucking shows about a small minority of people on benefits and they do not at all represent people like me, who have a well documented and real health condition that effects my daily life because they don’t want you to know about genuine people like myself, they have their own agenda and they just demonise everyone on benefits, which if you haven’t already guessed really grinds my fucking gears. Anyway that was off on a bit of a rant lol so back to what I was talking about, so yes I have continued to treat myself, obviously not as much as I did before as I’ve just not had the money but it has been an important part of keeping me going and keeping me sane. I’ve also taken a lot of time over the past month to just be by myself and not talking to anyone and that’s also been a vital part of getting through all this. Overall the last month has been good but the really low darkness is always there in the background, I’m just working really hard not to let it overpower me on a daily basis and I don’t think people appreciate just how hard it is, to battle with your own mind every second of every day, its exhausting. I’m not ashamed to say that I’ve been really low and struggling and I still feel low and I am still struggling and in all honestly without my lovely friends, my groups and counselling I probably wouldn’t be here right now. Besides I do not want to die as the person that isn’t my true self, I need to go through my journey to be the real me.

Moving on to my physical health, which as usual has been a bundle of fun…NOT! Where to start… I suppose I’ll start with my transition stuff as that is fairly straight forward because I am still waiting for my first appointment. But I am going to send them a letter with my new NHS number and ask if they know roughly when I should be hearing about my first appointment. To be honest right now I’m happy to be waiting for this for a few reasons, even though I’m desperate to get on my journey, I have other things in my life that need to be sorted before hand, ie money and meds, so its not really high on my list even though I want it so bad. Sometimes wants and needs differ and needs are more important. Last time I wrote about my knee and trying anti-inflammatory’s, I tried two and neither helped so two weeks ago today I had a steroid injection right into the joint and it has helped to a degree but it still keeps swelling up and hurting, it’s not as bad but still its not great. Also two weeks ago I started Gabapentin which is a anti-epileptic which is also used as pain relief. It seems to be working well along side my Tramadol but I am slowly lowering the Tramadol as my body is addicted to it and I want to see how well the Gabapentin works by itself. The other reason I want to come off the Tramadol is because I will need strong opiate based drugs after the surgeries I have throughout my transition. So I need to detox off it and hopefully when I need it in the future it will be more effective then it is right now. Oh my appetite is great since starting the Gabapentin, it has the same weight gaining effect as Quetiapine and I’ve put on 5lbs in two weeks. It does seem to be slowing down now and I’m not nearly as hungry as last week, I just couldn’t stop eating lol! I am being mindful of what and how much I am eating but it is hard. But to be honest I’m just glad I’m eating and its not a stressful thing. I’ve spoken to my GP about what’s happening with my referral to Southampton hospital and it’s basically down to my gender change…DO’H! So because I’ve changed my gender and title I effectively have become a whole new person, which is true but what happens is that all your medical history is deleted from the doctors system and your are put back on as a new patient, so what they are currently trying to do is get hold of the hard copy of my medical records in order to send to Southampton as they need to know everything before they see me. I certainly don’t remember everything that’s happened to me medically in the last 31 years because well its been loads lol. But yeah I’ve been assured that the practice manager is on it, I feel better now I know what’s happening but it is another thing that I am in limbo with. I swear I spend most of my time waiting for shit to get sorted out lol! Other then that not much has changed, still struggling with fatigue and not sleeping well but it is what it is, I wake up a few times a night sometimes and I just get up have a drink or a wee and sometimes I go straight back to sleep but sometimes I have to get up for a hour or so. I’m not stressing about this because my insomnia or painsomnia issues have been going on for so long now and I’ve tried everything to help me sleep through the night but its clearly not meant to be. I’m on long term Doxycycline at the moment so I’ve not caught any colds, although I have a bit of a chesty cough at the moment but that’s probably down to my sinus gunk dripping down to my chest, which ironically the Doxycycline is meant to help with…I feel its not working lol, my ENT app isn’t until next month so not much I can do or my GP can do right now.

Wow that’s a lot of stuff about me aha! I shall end on a update of my 4 four babies, who are all just in perfect health and are all amazing and are all helping me get through the darkest times and I am totally in love with them ❤

Ooh also here’s a few pics of us all

IMG_1750

^^ yeah boi I am 😀 haha

IMG_2260

IMG_2691IMG_2523

^^ Me and Harvey on his 9th Birthday last week ❤

IMG_2470

^^ Me and my boo boo ❤

IMG_2545

^^ Harley doing a bit of yoga lol

IMG_2529

^^Marley moo

IMG_2643

^^ Mr Scrappy doodle

IMG_2703

^^ My beautiful Foxy girl

IMG_2685

^^ I love this place

Right that’s all from this boi, its taken me hours to write this, its very therapeutic though and I do feel calm and grounded.

Peace out Batman

 

 

Am I losing it? – Update on my life

It has been another 7 days since I last posted on here, mainly because my mood has been really low and I’ve not had the motivation to do anything and a bit because my situation hasn’t really changed much and I’m so fed up.

So what has been happening in my life in the past 7 days.. Not much lol, mostly because like I said I’ve been depressed and I’ve isolated myself. I tried to go to the group social on Thursday afternoon but it was just way too much and I could only stay for an hour, it was just too overwhelming. I think the fact I had meditated before I went was a factor as while it is good, it can also have a negative effect.

I found this picture and it really spoke to me, I love it and look at it every day.

IMG_1428.JPG

It made me think about my current situation and yes while it is very stressful and I am struggling to pay my bills etc. I can still have a good day, I can still do things that will make me happy and I’ve been trying to do that by making sure the housework and laundry is all done, making sure me and my fur babies have what we need and by making sure I don’t isolate myself too much, which is hard when I don’t have much money but a day out doesn’t need to cost much. So yeah I am trying to make the most out of a bad situation but I am also allowing myself to feel depressed, stressed and overwhelmed, I’m just not letting my emotions rule my day.

I saw my GP last week and he said I have fluid on my knee, so he gave me more anti-inflammatory meds to try. So far they haven’t helped too much but I shall see how it goes and if it still hurts then he will give me a steroid injection into my knee joint :/ ouch! I also asked about changing to Gabapentin for my pain as the tramadol isn’t working so much any more.

A big thing happened this week and that was I left a site that I have used for 6  years, I won’t name it but its for people with physical and mental health issues and for carers of people with physical and mental health issues. It has been a huge part of my life and it has been helpful but I felt I no longer have anything left to give the members of that community as most of them just want to be validation and don’t want to recover and some members are down right toxic and I will no longer tolerate people who make me out to be the bad person and I will not tolerate people manipulating me to feel bad for them and that site has one or two people like that. I feel I am on a different path now and I no longer need that sort of thing in my life, I am trying to get away from toxic people. It does feel weird as it was a big part of my life for so long and I am feeling a bit anxious about it but I know it’s for the best.

Update on benefits stuff – I got a letter to say the courts have my information I sent and now they are waiting for the Department of Work and Pensions to get back to them and then I will be sent a court date. I just want it over so bad, I am SO close to it being over, I just gotta hold on a little longer. People keep telling me I’m doing great but I feel like I am losing control and just totally losing my shit, I’m desperately trying to keep it together but its so freaking hard!

My appetite has gone again, what a fucking surprise lol. So I’ve just been grazing on whatever I fancy and I’m trying not to put so much pressure on myself. The belief is that I have to eat 3 proper meals a day, but is that really fact? Do I really have too? No I don’t because I’m an adult and I cannot force my body to do something it doesn’t want too do and it doesn’t want to eat regular meals. I think because all my life I have been forced to eat 3 meals a day and always been told that is what I need to do etc and its a hard to break that thought pattern.

But yeah I have lots of stuff to work through as usual and its hard man, like so hard! I think I need to possibly seek help for the PTSD due to my physical health diagnosis at a young age, I think its really causing me a lot of issues right now, with my mood and just stuff. I can’t explain it.

Feeling a little relaxed for having wrote this, although I feel really disconnected so I’m not sure if that shows in who I write this but yeah.

My Mr Scrappy Doodles is 2 years old today 🙂 We took the bus to the park, it was so nice out, the sun was out and it was lovely and warm. Scrappy had lots of fun swimming in the sea and playing fetch and Foxy just followed us around peeing on everything lol.

Here are some pics from today

Peace out

Batman

Waiting is the worst part

It’s only been 5 days since I last posted but it feels much longer as I’ve been quite busy, mainly getting my PIP stuff sorted but I’ve also been doing nice things too, to break up the monotony of the PIP stuff.

I’ll follow on from my last post,

Mr Scrappy doodles continues to be in good health and he turns 2 next week, which has gone so fast. Foxy, Marley and Harley are also doing great and Harley has a birthday next week as well and she will be 1 years old. Its gone insanely fast.

Medical stuff – My whole knee is swollen, so is my ankle and my hip feels like its swollen too, so yeah my whole leg. The naproxen didn’t help at all, it just caused me a huge bruise on the back of my thigh. So I booked another appointment to see my GP and its this Friday…really early in the morning :/ But whatever my leg is really hurting and nothing is helping.

I have my CT scan next week which is cool but my follow up app with my ENT isn’t until July.. So I may try and see if I can bring it forward.

Disability Benefits stuff – With the help of a good friend to get stuff all printed out and another person who checked over my appeal. It all finally came together, yesterday I checked it over like 3 times to make sure everything wasn’t missing and it was all in order. I posted it special delivery which cost £7.10 but it ensured its safety to get there and they cannot say they didn’t receive it in time.

I’m glad its all done but now I’ve got to wait, which is almost as stressful. I so hope they re-think the tribunal, I can’t go through that, I just don’t have the energy for it. This process alone has taken everything from me, I have nothing left.

I’m feeling a bit lost at the moment because the process of writing my appeal has brought up so many feelings, the main feeling being anger and the fact that I’ve not dealt with the PTSD caused by my physical health illness and I don’t know where to start. It’s all been very traumatic and something no one should have to go through.

How do I feel right now? I don’t know, I think I feel sad, I suppose you could say depressed. I just don’t feel connected with myself, I’m not grounded, I’m just exhausted in every sense of the word. Tonight I will meditate, I will try and relax a bit more.

I’ll end this now as my brain has switched itself off.

Peace out

Batman