Update on working on myself as a whole

I thought I would do an update on last weeks blog about looking after myself as a whole, rather then just focusing on my mental health.

Last week I focused on moving more and eating better and it was pretty successful, I made a conscious effort to eat more fruit and veggies and different meals, which I do totally feel better for and this week I will continue to eat a more of a balanced diet than I was previously doing. I’m enjoying cooking for myself again, which is something I do really enjoy doing.

I’ve also been using my mini stepper everyday and again I feel better for it. Even though some days it feels like such a drag, I forced myself to get up and move and have definitely noticed a bit of a change in myself. I feel energised after and my brain feels a bit more awake too.

I up my mycophenolate tonight, so I have some tasty meals that I’ve prepped in the freezer just in case I feel sick and exhausted and also I have the covid vaccine on Wednesday so I want to make sure I’m 100% prepared with quick and easy meals and snacks for the next week or so, as its one less thing to worry about if I do feel a bit rough after the vaccine and adjusting my meds a bit.

But I’m going to continue to try and look after myself in a more rounded way but I know this week maybe a bit trickier and that’s ok. I’m not making huge changes and I don’t make myself guilty if I’m not doing what I set out to do. I’m just trying my best and that’s absolutely good enough.

Most days last week I struggled to get up before 11am and some days I didn’t get dressed until late afternoon as I was just resting and my brain was just totally switched off as being in lockdown we are all dealing with something that is having a huge impact on mental health, which is a pretty traumatic event and sometimes your brain just needs a break and switches off and that’s totally fine too. Plus it was so grey and rainy last week I just had zero motivation to get up early because there was nothing really I needed to be up for, I’m not doing anything or going anywhere to getting dressed at 4pm is totally fine.

I’m just rolling with what is good for me, but my mind, body and soul, not just my mind. Overall I am definitely feeling better then I was, although I am feeling super exhausted but that’s not unusual for me lol!

Peace out

Zak

Time to work on my body (as well as my mind

Hey all, how are you finding lockdown this time around? I am overall doing ok, but I’m still struggling a bit, but I am just trying to take things at my own pace and not getting too wrapped up in trying to compete and keep up with what I see other people doing, especially on social media. It’s super easy to compare your life to others and for me personally I can get myself completely lost in another person and just completely abandon who I am because I want to make that other person happy, which that in itself isn’t bad, but losing yourself in the process isn’t great and I also feel guilty about the things I think I SHOULD be doing with my time during lockdown… but ya know most days my focus is on getting through another day, my focus isn’t on the future right now because it is too uncertain.

Having my complete focus on making myself feel safe and comfortable has made other things fall by the way side, which isn’t too good but I can’t do it all. But I do need to find a bit more balance then I have at the moment. I’ve been doing too much sitting around and snoozing and not enough moving around, but its Jan, I find it harder to get motivated to get out anyway because its cold and rainy, however some days I have used that as a bit of an excuse to not bother lol!

So I ordered myself a mini stepper, now I have never been super healthy and fit because of my autoimmune disorder but I was much fitter then I am now before the very first lockdown. Like now I get out of breath putting my boots on which is really bad and I keep getting constipated, I know TMI but I’m here to tell my whole truth and that is partly because I’ve been so lazy regarding cooking different things and I’ve been eating too much sweet stuff, not drinking nearly half of what I usually drink and just not moving a whole lot and all of that has contributed to weight gain and belly issues.

My goal aimed at just loosing weight, I want to get my fitness levels back to where they were before lockdown and in fact probably before I had top surgery nearly 18 months ago now because that’s when the weight started piling on. So hopefully eating a bit better, drinking more water and moving more I will feel so much better over all.

Right now because I keep getting constipated my belly looks like I’m pregnant and that’s partly down to testosterone too as its redistributing fat and muscle, but it does make me feel uncomfortable and doesn’t help with the gender dysphoria. So that’s another big reason I want to try and get healthier.

My goal is to use the mini stepper every day and push myself further each day or every few days, set myself little goals etc as I am quite competitive so I know I can do it.

Keeping up with my walking which is where I get my exercise from has been more difficult during lockdown because I am high risk, shouldn’t really be out or going very far and its had a huge impact on my over all health and mental health so I am really hoping this can help me.

I shall keep everyone posted

Peace out

Zak

Where do I belong – communities

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

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

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

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

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

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

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

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

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

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

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

Peace out

Zak

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

Having a chronic illness is hard work, especially at the moment, with the current pandemic. As I’ve mentioned in previous posts I am classed a vulnerable and I’m meant to be staying inside for 12 weeks, but I’ve had to go out for various reasons.

Now I have finally been given a priority delivery slot with Tesco, which means I don’t have to go into any shops to get my food shopping. There’s also a service provided by the council where someone can pick up medication for me and do any other bits I need doing. Which is a relief as I was starting to get more anxious about going food shopping and collecting medications myself.

So now I have things in place for essentials I can relax a bit more, the only thing I’ve still been doing myself is walking the dogs as I need to get out an exercise as I’ve been really feeling the effects of not moving around as much as normal. I didn’t realise that just by getting out each day, doing general stuff like food shopping, going to hospital appointments, going to the cinema etc was so good for my physical health. In the last few weeks since everything has closed and I’m stuck in the local area, my joints have been super painful, especially my lower back and knees and my chronic fatigue has been much worse as well.

I’ve spent many years building up the strength in my legs to combat the chronic pain in them and same with chronic fatigue, I’ve spent years building it up to a point where I rarely needed to rest or sleep in the day time. But now I feel like I’m back at square one, which is really frustrating.

Now I’m have more clarity about dog walking, I’ve been out walking more, so I can build myself back up again, so I can feel a bit more human again and have a sense of well being.

Yesterday I had to have a 24 hour blood pressure monitor, as my blood pressure has been quite high recently. I think its mainly down to anxiety and possibly the change in testosterone. I don’t know why they haven’t prescribed propanaolol yet, it’s a beta blocker but also helps with anxiety. I get the results next week and I’m going to ask about the beta blocker as I think its probably the best course of action.

The blood pressure monitor went off every 20 mins, which was really annoying lol as I had to stand still when it was taking my blood pressure because it didn’t read it if I was moving around. Then in the evening from 10pm it went off every hour. I went to bed at midnight in hopes I would fall asleep before it went off again. I managed to get comfortable and I managed to get to sleep, I was conscious a few times throughout the night of it going off to take my blood pressure but apart from that I slept pretty well lol! The world could be ending and I still be asleep haha!

A couple of weeks ago they did an ECG which was fine and some blood test and only one flagged up as a not normal. Turns out I am borderline under active thyroid, which really makes sense, I’ve put on weight recently which I’ve been struggling to loose. They’ll repeat the bloods again in 3/4 months time to see if it’s still the same or its sorted itself out. Hopefully it will have sorted itself out by then, as I really don’t need anymore illnesses on top of what I’m already dealing with at the moment.

It’s been really difficult dealing with everything at the moment, but I am trying to keep a sense of normalcy. Each day is different, some days are much easier then others and that’s ok, just trying to go with the flow and trying not to push myself.

Well that’s it for now,

Peace out

Zak

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

Dear friends,

Dear friends, old and new. To those who I’ve known for 20 years and to those who I’ve known for 2 months. I wanted to write this to catch everyone up on where I am and where I’ve been.

In January, I was in a really dark place, which is somewhere I haven’t been for a long time and I feel like I’m only just coming out of the other side of it, but I still have a way to go.

As a result of this darkness I removed everyone from my Facebook for a good 3/4 months. I was angry, frustrated, isolated, depressed and struggling to survive.

But in that time I did a lot of soul searching, I know such a cliche, but I did.

I realised that over the years I’ve been quick to shut people out of my life, I’ve been quick to give up on friendships. I was trying to cut out “bad energies, drama” etc but in doing that I closed myself off to the good energies and good stuff.

I think I became so closed off because I’m so willing to help everyone, that sometimes I get burned. That’s not necessarily down to people themselves but due to my lack of boundaries and respect for myself. I thought if I made other people happy then I’d be happy but it doesn’t work like that.

Then about 5 years ago I started exploring my gender and came out as trans and I began my journey. Which again I was really open about but I was also wary of being people’s token trans friend and I was just anxious about not being accepted or whatever. So again I made my friend circle smaller.

In making my world smaller, I’ve missed out on living. I’ve missed out on friendships with some really great people. I gave in to the negative inner voices and the darkness, I allowed myself to become isolated and alone, the anger and frustration grew within.

January was my breaking point but in the weeks and months after I spent most of time alone, thinking, reflecting and meditating.

I started to allow myself to be open, slowly I began to add people back on FB, I began to reach out to friends. I started to ignore the negative inner voice and the darkness and walked towards the light.

It’s by no means perfect, I still struggle with anxiety and depression but I’m finding it a bit easier to deal with.

I often felt my expectations of people were too high, but I realised I rarely expressed my expectations in my friendships, I can’t have expectations if people don’t know what they are.

My voluntary work has helped me so much, it’s helped me with not being so isolated, I’ve made some incredible new friends who’s friendships I am so incredibly grateful for and hopefully in 20 years plus we’ll still be friends, still having adventures and experiencing this life together.

For those who I’ve not spoken to in a long time, who I’ve recently added back, I hope you’re well and forgive me for being so distant, I had to go off in order to grow into a better version of myself and I hope to hear from you soon, much love to you.

For everyone else, know that I appreciate you, I may not say it as often as I should or even show it but I do very much appreciate every friendship I have. You’ve kept me going even when I didn’t want too. I will continue to try and be open with you about everything, it’s something I’m still working one. But I’ll get there.

Thank you to everyone for your patience, love, support and sheer awesomeness!

I love and appreciate you all!

In 6 weeks time I will embark on the next stage of my journey, my physical transition, my spiritual journey.

I’m excited, I’m a bit scared, I’m nervous but I am so ready for it, I know it’s going to be a challenge but I’m ready to face it head on.

I know I will have my friends by my side helping me through and I’m so excited to have you guys with me! I can’t wait for this next adventure!

Peace out

Zak 💜

Dealing with disassociation – with self care

Schedule for tomorrow, this helps so much with disassociation and trying to get some stuff done. It’s mostly dependent on weather, pain and energy levels. I’m hoping I don’t feel as wiped out tomorrow so Scrappy and I can get out for a good walk, I may take Fox if it’s not too cold.

For me this is a form of self care whilst helping me stay in the moment. But I always make sure how I’m feeling before doing anything, so that my physical health is also taken into consideration, as well as my mental health.

I’m hoping I can get out and walk the dogs tomorrow as I was so wiped out this weekend because of the pneumonia jab I had Friday, but if I still need another day to rest and recover the that’s ok too, I have other low energy things that need to be done at some point as well.

I never put pressure on myself to complete everything and in the time scales I’ve set. It’s more of a reminder of what I need and want to do and having a rough time scale helps. If I manage everything then brilliant, it does make me feel good and even if I don’t manage everything but do a few things then that’s great as well and also makes me feel good because at least I’ve done something. But if I don’t manage anything at all because I’m in too much pain or too exhausted or both then that’s also absolutely fine too, because resting and doing nothing is as good as being productive because it’s still extremely important self care

Peace out

Zak

Living with a chronic illness – Hospital appointments

I’ve not written about my physical health for a while, but in the last week I’ve had 3 hospital appointments which was crazy! They’re like buses all come at the same time!

The first hospital appointment was Wednesday 16th Jan was my first physiotherapy appointment and it went really well. He gave me some exercises to do, which I’ve been doing most days. I know I need to do them everyday, but I’m feeling overwhelmed at the moment, so most days is better then non. He basically said that physio and insoles in my shoes will be something I need for the rest of my life because I am on the higher end of the scale for hyper-mobility, of which he said I score 9/9 which wasn’t really news to be. But I came away feeling happier, it seems like I will have continual care regarding physio, which isn’t something I’ve had before and its something I feel I will need for a while in order for me to make sure I’m doing my exercises and that its continuing to help with the chronic pain. He said where my muscles and ligaments are fairly weak from the hyper-mobility, these regular exercises will help strengthen them in hopes that is will help the main areas of my chronic pain, which is lower back, hips, knees and ankles. Overall a good appointment, my next one is in March so I have sometime to do my best with these exercises.

This Wednesday 23rd I has 2 hospital appointments in the same day, which made for an incredibly long, exhausting day.

My first appointment was at Christchurch hospital at 11 am and that was for Rheumatology, as soon as I got there I saw the nurse and she came over and said hello to me, I asked her if she needed a pee sample as I was bursting to go! and she said yeah sure that would be helpful and got me a sample point so I could go. I waited for about 10 mins for my appointment, as I was a bit early. Man its so bloody hot in hospitals! I was all wrapped up in a million jumpers as it was cold outside and had to take them all off when I sat down, for fear of boiling to death! When she had finished up with her previous patient she called me in. She’s quite a young nurse, I think she’s around my age (I’m 33) or a bit younger, she’s so easy to talk to and we talked about everything from my physical health to my transition. Which is great to have a nurse ask questions and actually be interested in me as a whole person. She’s going to ask me physio to write me a letter for the gender clinic re top surgery, as its something I forgot to ask him when I saw him. I said that the physio had said my posture needs correcting and I explained to her, my posture is bad because I often roll my shoulders in and hunch my back to hide my chest as I don’t bind very often and I explained that having top surgery would correct my posture because I wouldn’t have to be always hiding my chest. I asked if he could write a letter in support of top surgery as it may help push things along, she was very understanding and said it makes total sense. The plan is to have a dexa scan (bone density scan) to check my bones, as my last dexa was in 2016, so I’m due a scan. She also agreed its time to see how well I do coming off steroids, as I’ve been on them half my life and its time to see if I can remain well off them. The plan is to go from 5mgs to 4mgs for 4 weeks, longer if I don’t feel great. She said to go which how I’m feeling and then after that go down to 3mgs for 4 weeks and by then I’ll be seen by her again to catch up with how everything is going. I start on the lowered dose tomorrow, I’m a bit nervous, as I know its not going to make me feel so great to start with but I’ll stick with it. Overall another great appointment.

I got the bus into town and I had some time to kill and I was hungry, I decided to treat myself and I went to a ice cream parlour, where I had a Oreo waffle, covered in chocolate sauce, crumbled Oreos and toffee ice cream. I couldn’t eat it all but it was sooo nice and very much needed, seeing as I’d been up since 6:45am!

I got the next bus to Poole hospital and this was an ENT – ears, nose and throat appointment. My appointment was at 2:30pm and I got there 10 mins early and again MAN it was so freaking hot in there! They ran 50 mins late, I was so exhausted and getting a bit agitated because I was hot and wanted to go home. But it was worth the wait and thank god for our NHS we are so lucky to have it. This was a new ENT doc to me, she was super nice and easy to talk too and had clearly read my notes which was great. There were a couple of students in there, observing appointments, I love having students in my appointments because these young people will be looking after me when I’m older and if they are interested in specialising in rare medical conditions then I am definitely all for it! I’ve had meetings with rooms full of doctors, I’m always participating in studies where the hospital shares my tests results ets, I’ve spoken to many student doctors and nurses over the years and I think its really important for them to be observing and learning different aspect of patients that in the future will be their patients. I digress, but its an important point. We had a brief chat about my medical history and asked how I’m currently doing, as to which I said I’m doing well although I’ve had quite a blocked nose recently but I think that’s to do with the cold weather and going from hot to cold environments. She saw me at her voice clinic, so she could have a look up my nose and down to my vocal chords. It was pretty cool to see it on the screen, as she recorded it so I could have a look. She was surprised that I don’t have a hole in my septum, as that is often a symptom of my condition, which as a reminder is called Granulomatosis with Polyangiitis/Churg Strauss syndrome, so that’s good news! She was also surprised that I have no irreparable damage up my nose, vocal chords or wind pipe, despite the fact I’ve had my wind pipe chemically widened a few times in my late teens early 20’s. She said everything looks great and it shows that my condition has been well controlled over the years. She agreed to see me again in 6 months to touch base but if I need anything in between then I can call and see her sooner if I need too. Again despite the long wait, it was worth it.

I”m really happy with how things are going for me health wise at the moment, I have a great team of doctors looking after me and I feel listened too which for me is so important and I also feel involved in my care, which is something I’ve not had before, mainly because I was 14/15 at the time I of my diagnosis.

The long day didn’t hit me until Friday afternoon. Friday morning my mum came round at 9:30 am, she helped me sort out the curtains in the bedroom as I had just thrown them up years ago, they’re too long and I’d not pulled the string through so they were really baggy at the top. She showed me how to do all that which was cool as they look better now. We went to a cafe, for a drink and a scone which was nice. She dropped me back and I went for my testosterone shot at 12pm. After I walked home, I got the dogs ready to go out (didn’t leave straight away) and as it was nice sunny and fairly warm, we got the bus to Hamworthy park. It was such a nice walk, at one point I was sat on the bench watching scrappy running in and out of the sea and foxy just wandering about with the warm sun hitting my face, just perfect. We got back about 3:40, scrappy had to have a shower as he was covered in sand. I fully reclined both sides of my sofa, covered it with blankets, did up the hot water bottles and ordered some lunch/dinner. After I’d eaten a wave of tiredness came over me, I snuggled up on the sofa with the dogs and the cats and I think I fell asleep for about 2 hours. It was so needed, I’d felt exhausted all day but it didn’t really hit me till I stopped and that exhaustion lasted till Saturday.

Its funny I don’t always feel the effects of a long day like that, till a couple of days later. But I’m feeling better today, although that may change this week when I start lowering the steroids!

That’s it for now,

Peace out

Zak