Self Care

I’ve not written much about self care recently, as after surgery self care was kinda a given. I had to listen to my body and look after myself.

Recently I haven’t been feeling great, I’ve been feeling absolutely exhausted and generally just been feeling unwell, but not enough to definitely say I have an infection or something. It maybe a delayed reaction to surgery. But I see my specialist tomorrow morning so I’m hoping to get more answers.

So because of feeling so exhausted all , I’ve been listening to my body and resting and sleeping when I’ve needed too. Which sometimes is a little frustrating as I feel like I’ve wasted a day. But self care isn’t a waste of time.

Today I’ve been resting and sleeping, as I’ve felt so exhausted. I eventually got up and did the housework which always makes me feel like I’ve accomplished something.

Took the dogs out for a quick wee, it’s been so grey and miserable today. Despite that I decided to go into town. I got myself some frankincense essential oils, as it’s meant to help relax the chest and help with colds and infections. I went to lush to take in my old pots in exchange for a free pot of face mask stuff, I also got myself a shower bomb too. I then went to Asda to get a few things.

I could have easily just gone to Asda, but I knew I needed to get out for a bit. Even if it was just to a couple of places.

I’m pleased I treated myself to some self care things 🙂 It’s important to me to look after myself and my needs. It’s keeps me relatively well, physically and mentally.

It’s important to slow down and listen to what your body needs. You only have one body, there is only one you.

Certain self care aspects of my days are non negotiable, like taking my meds in the morning and evening, making sure I sleep when I need too, eating as and when I feel hungry, putting my incense sticks on in the morning and evening, doing housework every other day, attending appointments. There are more I could list but it would take a while.

I’m feeling pretty exhausted now, so I’m going to wrap it up. I’m not sure this blog will make much sense lol.

Peace out

Zak

Left behind

I always feel like I’m being left behind, left out, like I’m still a little kid just still struggling to figure out what’s happening.

I feel like I’m missing out and being missed out of things.

I feel like no one really knows me or even wants to invest that time into me.

I feel that because I’m sensitive and emotional, it just puts people off.

I’m just a small person with big feelings and I know I’m weird and childlike but life is far too short to be serious.

I’ll never fit in anywhere properly, my life seems like it will be me and my animals and just temporary people.

That’s not what I want though, I want to find my tribe, people who truly accept me for me and truly mean it.

I find it hard to trust others now because I’ve always been let down and disappointed by people.

I’m tired of feeling lonely and being alone.

I won’t change who I am to fit in with who anyone wants me to be. I’ll meet you where you’re at if you’ll do the same for me.

The path I’ve been walking for the last few years have been incredibly lonely, with brief times of sunshine and happiness but never lasting long.

I want someone to take my hand and show me how proper love and friendship is meant to be.

I’m tired of the darkness, I want to see the sunshine again

Peace out

Zak

The light at the end of the darkness

I feel happy again and I can say that now and actually mean it.

Just a few months ago I was in the darkness, struggling to get through a day. At times I felt so tired, I just didn’t want to keep going.

I recognised that it’s not that I wanted to die, I just needed the pain to end.

At that time if you had told me to just hold on because you’ll soon be surrounded by some amazing people and you’ll soon be having top surgery, I probably wouldn’t have believed you.

My world was so dark, I just couldn’t see that there would ever be light and happiness again in my life.

But sat here now late at night, I feel happy, I feel content, I feel understood, I feel connected, I feel loved, I feel like I’m wanted. And it’s the most amazing feeling ever because I don’t feel I’ve ever really experienced it, I’ve never been around a group of friends who encourage each other, genuinely care about each other, have different passions and talents, who build each other up, help each other without question.

Most of my past friendships have come with conditions and they were about what I could offer, non of those friendships have endured and non of them really helped me grow, but they opened my eyes to the fact my kind nature attracts damaged souls and can easily be taken advantage of.

But now it feels different and for that I am eternally grateful, I let myself be vulnerable and open, which was scary but it’s paid off.

I know these people won’t all be in my life permanently and I’m ok with that, I know we were brought together to help each to continue to grow through our each individual journeys, by coming together as a collective, who’s knows where this will take us in 6 months/ a years time.

Its already helped me and started to heal some of the hurt I was carrying inside, I feel happy, I want to live, I’m actually excited about life now, I want to start looking to the future and what that will bring.

The only changes I made was I let myself be open and vulnerable and fuck that was scary but it’s something I’m going to continue to do, so I can keep experiencing life and hopefully new friendships and opportunities will arise.

You know who you are and I’m so grateful 💜

And to everyone in my life, know I love you, I appreciate you and I support you 💜

Peace out

Zak

Psych app!

So a few months ago I asked my GP to refer me to the my psychiatrist and I was meant to have an appointment last month, but I had to to reschedule.

Anyway I had my appointment first thing this morning. 9am… why do they book such early appointments lol!

I felt fairly awake this morning though, so it wasn’t too much of a struggle and I had enough energy for to get the bus up there.

I didn’t have to wait too long before I got seen.

I knew what I wanted to say and what I wanted from the appointment. I think that always helps, to have an idea of what you need/want etc.

So I told him everything that’s been going on recently and what I’ve been struggling with. About the anxiety, depression etc.

I said I would like to maybe do DBT again, maybe not the main therapy group but maybe the group people do whilst waiting for the main therapy.

I also said that it’s been 6 years since I finished DBT and then there’s no follow up. And he thankfully agreed that it would be a good idea, he also gave me Trazodone to help me sleep better and hopefully it will help with my anxiety too.

My next appointment is in 3 months and then I’ll have an appointment with Deirdre, she heads up the DBT group.

I last saw my psychiatrist January 2018 and I wasn’t open, I didn’t know what I wanted or needed and I didn’t want to be there. So nothing happened as a result, but I don’t think I was ready.

This appointment was different from most appointments I’ve had there, because I wanted to be there, I know things need to change and I know I can’t do it alone. I’m ready for the extra support and I need the extra support.

I’m glad I have things put in place for now and after my surgery in August. Feeling pretty proud of myself 🙂

Peace out

Zak

The darkness surrounds me

I wrote this last night, despite a nice day the darkness still takes a hold of me and I can’t shake it off

You ever just feel like you’re a total inconvenience to everyone?!

But it’s almost like they only stick around out of duty and pity they feel for you.

You ever feel so lost and alone, fractured and broken that nothing seems to make a difference anymore.

I feel like I’m being left behind, like I’m on the outside of life, peering in to catch a glimpse of things that could have been.

I feel like I’ve wasted so much time doing nothing and I still have no idea what to do.

Like why am I even here? I have no purpose, no point.. directionless child who is just floating around in the darkness all alone.

Faking being ok for my whole life, I can’t keep it up, it’s a heavy weight. But I feel I can’t be depressed all the time because well people don’t like that.

I’m just an old toy left upon the shelf, battered and bruised, broken and dusty. Left unloved, forgotten and alone.

I want to step into the light out of this darkness, I’m tired of going it alone

Peace out

Zak

Update – A bit of everything

I’ve been on and off the laptop all day doing one thing or another and I’m still on here just messing around, googling random things, as ya do and looking up stuff.

It’s been a pretty good start to the week, I had all intentions of getting up at a reasonable time but it didn’t end up that way. I woke up about 7 am and my hips and legs were so painful, painful enough to wake me up. I managed to lay in bed until I was rudely woken up by the workmen, although our intercom and the lock on the front door to the communal door is now fixed.

I got up and had some breakfast with the intention of getting the housework done afterwards but my hips and legs were hurting so much it just zaps my energy so much. So I feel asleep on the sofa all snuggled up with the dogs. After that it still took me a while to get myself off the sofa, I did eventually get the housework done and all the other bits I do on a Monday, like doing my med box up for the week.

As I said I’ve spent most of the day on and off the laptop doing one thing or another but I’ve needed this time to just rest and take care of myself and my body definitely needed a rest.

I’m so excited for tomorrow, I’m getting my second testosterone injection in the afternoon. I can’t wait to see the changes from this injection over the next 4 weeks. This is literally the best decision I have ever made, whilst everything else may not be where I want it to be, this is the only thing in my life that is just perfect, its exactly where I want to be, exactly who I want to be.

My mood has been pretty settled, I’ve just been feeling good and that’s a feeling I’m starting to get used too. I’ve not noticed any drastic changes in my mood which is good, as myself and the endocrinologist were concerned that it could cause me to have a manic episode. In the past when I’ve had a steroid injection for my physical health issues, I’ve had trouble with insomnia and a manic episode after the injection and as the testosterone is steroid based that’s why I was concerned. But luckily so far I’ve had not had a issue, I have had a few nights where its taken me ages to get to sleep but I wouldn’t class that as insomnia. I am hopeful it stays this way, insomnia and manic episodes aren’t fun and I don’t really want to up the Quetiapine as I don’t want to ruin my weight loss.

Talking of weight loss, I’ve got 8 1/2 pounds to go until target.  I hope I can reach this before Christmas, I’m going to give it my best. I really want to succeed at this, I know I can do it. When I started it was super easy, as the months have gone its gotten a bit harder and I’ve gone off track a tad over the last few weeks. But I am determined to get to target.

Anyway I shall update with a transition post tomorrow after my T injection! woohoo!

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

Living my life to accommodate an illness I hate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peace out

Batman

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