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

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

Day in a life of a trans guy -Transition update

I haven’t written a blog post on solely on my transition since August from the looks of things, I think because I’ve felt like things aren’t moving along as quickly as I want it too but also in the winter my motivation ebbs and flows, so I find it difficult to write on a regular basis.

On Feb 22nd 2019 will mark 18 months on testosterone, which seems so long ago but its not really that long ago. I still feel like there’s not been much change in my voice, but I hear my voice all the time so its hard to tell, I may do a voice comparison video soon. The facial hair is growing well though, I’ve not shaved in nearly 2 months as I wanted to see what it looked like and my moustache and chin hair as very nearly joined up together! haha. I think I’ve said this before but I don’t think I’ve ever examined my face so closely since starting testosterone, always admiring my facial hair and looking at the spots on my face.

I’m still waiting for a second consultation for top surgery, I did write them a letter a while back in which I have had no response too, so I may chase that up soon, with either a letter or phone call.

As in the previous post I mentioned about the physio writing a letter in support of top surgery. I’ve also got a letter coming from Pause cat cafe where I am currently volunteering, as at my last appointment I was asked to find a new voluntary job so I can prove I am interacting in real life as male. Hopefully this will help support and push along my quest for top surgery.

My testosterone injections are still 3 weekly and my bloods are all looking fine, which is good. I’m due some more blood work soon.

I have an endocrinology appointment up at Charing Cross Gender Identity Clinic in Feb, 2 days before my birthday. This will be just a general check up with how I am doing on testosterone and how is it interacting with all my other meds if at all. Which for me I don’t think there are any interactions with all the other medication I am on.

^ facial hair! Woooo

^ just my face (had to upload these via the app on my phone for some reason)

I have been struggling a lot with what I think is disassociation probably down to gender dysphoria, but I’ll talk more about that in the next post

That’s all on this for now,

Peace out,

Zak

*Insert*Title*Here*

I don’t often write in between my weekly transition blogs, but I feel like I needed to write today, I got things I just need to get out and maybe it will help me make sense of everything.

It’s probably gonna come out a bit all over the place and scattered, but that’s how my brain is feeling at the moment. It probably won’t be strictly transition related but a bit of everything that happening in my life at the moment, so transition, physical health, mental health, family etc…

I can’t even remember the last time I just wrote a regular blog entry, must have been a while ago now.

I literally don’t know where to even start… Ok I’ll start with the good stuff going on, so I can get into the flow of things and unpick my brain as I go along.

My name change is all official now, which is really awesome and feels so good. I am now legally Mr Zak Dyllan Mills! Woohoo! I’ve already changed it at the bank and the doctors and I’ve written some letters too, they just need posting. It just feels really right and just the next part of my transition, I feel much more like me now. Which probably sounds weird as its just a name but for me a name is quite an important part of my identity and how the world views me and how I view myself. So yeah feeling pretty awesome about that.

Last Sunday my new little nephew Alex came into the world, weighing in at 9lbs 3! the lil fatty lol but he’s so damn cute. I already had cuddles on Tuesday with him, he was just so content just laying on my lap fast asleep, he’s so chill. Proud uncle to 3 nephews, which is insane! the eldest will be 9 this year, its just flown by so fast. I absolutely adore all of them.

Physical health hasn’t really been too great this year, I’ve had infection after infection. Over the new years I kept getting nose bleeds, I then had a sinus infection, then last month I had a ear infection and at the moment I’ve had a chest infection for about 3 weeks and I’ve had lots of really bad nose bleeds as well. So I’m not sure what’s really going on, but I went to Southampton hospital this week and he took some blood to see what was happening. As he didn’t want to up the cellcept and make me more immuo-suppressed just in case its just been back luck that I’ve been getting ill and not due to my Churg Strauss Syndrome playing up, but he can’t tell until he gets the results. I’m hoping I’ll hear about the results soon and I’mm also kind of hoping its just been a bad run of luck getting ill and nothing more serious then that. But when nose bleeds are involved I know its more likely to be my condition as nose bleeds were one of my first ever symptoms. I’ll just have to see what happens with all this… I am hoping its nothing serious, I’d rather not up any medication if I don’t have too.

My mental health has been a bit of a mixture recently, its been quite difficult to deal with and I know its made me a bit harder to be around as well. Its not really been the bipolar that I’ve been struggling to control, although fighting with the depression and bad thoughts some days seems like the easy part of it all. I’ve been really struggling with the gender dysphoria, it hits so hard and its overwhelming and intense beyond words. The slightest thing can kick it off and I feel like I have zero control over it, which in itself is kinda frustrating and a bit scary.

Its my chest that is causing all the distress, anxiety and stress. I want top surgery so bad. I’ve never liked my chest, its always made me feel uncomfortable and embarrassed. When the dysphoria hits, I feel so detached, I feel like a ghost, I just want to be as far away from myself and my body as I can get, so I just disassociate but then I find it hard to get back in my body again. It really effects my mood, it makes me feel so depressed and really agitated because I’m not comfortable in my skin, because it doesn’t feel like it belongs to me, its never really belonged to me. I know I have to do some work around acceptance of self etc, as I know surgery will not fix all the emotional stuff but it will ease it. But right now that seems like a big thing to work on by myself.

I’m already starting to stress about summer and the warmer weather, as I get hot easily so it wont be as easy to cover up while remaining comfortable. I’m already aware that its gonna cause me a huge deal of stress and anxiety and it may make me less likely to go out far, I’m already anticipating how I’m going to feel, be etc… So I don’t know how I’m going to handle that and get through it.

Not being able to bind my chest makes it all the worse, I think maybe if I could bind that would take a bit of anxiety and stress out of it, I’ve been still trying on the high impact sports bras as they were the most comfortable out of everything I tried but its still not comfortable enough, especially with my chest problems I experience anyway. Its just so fucking frustrating! and doesn’t seem to be getting any easier to deal with, but the longer I’m on T the worse its getting to deal with and most days I feel pretty agitated and anxious. Its not so bad if I’m just at home and not really going anywhere, but as soon as I’ve got to go out for any period of time, especially on my own then I feel so self conscious, agitated and anxious.

I feel like I’m stuck in a limbo, like life can’t move forward right now and I know I’ve stopped moving forward, I wouldn’t know where to go now anyway. I just feel stuck, waiting for life to start again but I can’t find the button. I know I shouldn’t be waiting for top surgery but that’s what it feels like, I feel like after that then my life can start going again, where too I don’t know. I know my life can be better then it is right now, but I don’t know where I’m going, what I want, what direction, what I should or shouldn’t be doing… I’m in a rut and I hate it. Desperately trying to find things that make me really happy and not much is making me as happy as before. I mean I’m not totally unhappy, but I know things can and should be better, I just lost the drive to find it, I feel lost.

Ok… so maybe I needed to write this a more then I really realised but feels good to get it all out, I can breathe now. Been feeling mostly ok today, as I’ve stayed close to home, I’ve only been out to take the dogs for a run. Have felt so so tired today, I’ve just been chilling and looking after myself. I also finished writing out my ESA forms, I just need to get my paperwork together and then Monday I can post it all off recorded delivery, so they can’t say they didn’t get it. But I’ll sort that out on Monday I think, gonna spend the rest of the weekend just relaxing and looking after myself.

That’s it for now, am getting hungry…bloody steroids lol! Gonna go cook myself some food, although I’d really love a take away but money is low.. so cooking it is lol!

Peace out

Zak

Transition update – Week 30 on T

Another week on T, I think I’ve been on testosterone for about 7 and half months now which is cool.

I had my peak testosterone blood test this morning, hate the fasting ones! especially at the moment as I’m on a higher dose of steroids for my chest, so I’m so hungry all the time. I can’t wait to come off them again, I should be finished them by next Friday I think.

Feeling good, nothing much to report really with the physical transition. I sent my deed poll back yesterday! So really excited about that, can’t wait until its all sorted.

I got a new nephew on Sunday which is super exciting! He’s right lil chunk, 9lbs 3! I’m going to see him a bit later, can’t wait.

I’ve got such brain fog at the moment because of the steroids, I can’t really think straight. My heads all foggy, its so frustrating.

I’ve not really been up to much, I’ve just been trying to get better, as I’ve had a really bad chest infection. It finally seems to be shifting now, which is good.

I did a Tai Chi class yesterday, which was really cool. I really enjoyed it, definitely want to find one locally, if I have the confidence to join.

All transition stuff is going well, I can’t wait for my first consultation of top surgery in July, it can’t come soon enough. Its the only thing that’s really distressing and I want sorted like right now. I may look into how much it would cost privately and see if I’m eligible for a credit card… because the wait is just so long. Its something I’m going to look into and do some research.

That’s it for now.

Week 30 on T

^ This weeks picture

^ This weeks video

Peace out

Zak

Transition update – Week 29 on T

This week I have some big news! But before I talk about that I’ll talk about other stuff that’s transition related.

This morning I had a blood test to check my testosterone levels, this is the trough which means that my testosterone levels will be at their lowest. I then had my testosterone injection done, which went well. Next Tuesday I have another blood test which will be the peak of my testosterone levels and from that they can work out if my levels are too low or high enough. I’m still not convinced that my levels will be high enough but I’ll find out next week.

Again no massive physical changes going on, other then my hair on my face, chest and stomach is getting darker which is really cool. I’ve still not had the confidence to start shaving yet but I’m in no rush. Voice is definitely starting to change, it sounds more noticeable to me now, so that’s pretty cool and others are starting to notice it too.

The gender dysphoria hasn’t been too bad over the last few days, that’s mainly because my mood has lifted a bit, which makes everything a lot easier to deal with. I feel like I’ve got a bit more positive energy going on. I felt a real energy shift on Saturday and I’ve been feeling really calm and peaceful, it feels so nice.

I’m ill yet again at the moment, I have a chest infection so I have more antibiotics and a higher dose of steroids. Hopefully it will kick it soon, I’ve had a high temperature, I ache so much and my chest has been really sore. I’m anticipating a bit of insomnia though being on 35mgs of steroids, hopefully it wont be too bad.

So the big news! which I have left till last on purpose. 9 years ago before I even realised I was trans, I changed my name to Dyllan. I wanted to change my name as I’d always hated my birth name, it never felt right, it never felt like it was me at all. I always felt disconnected from my birth name. I purposely picked Dyllan as its the unisex was of spelling it and I was so sure I wanted a unisex name, but I couldn’t tell you why I wanted a unisex name, I just did. Now it all makes sense as to the why I did what I did.

Recently I have been thinking a lot about my name and how I want to change it to a masculine name, rather then have a unisex name. Since starting testosterone and having physical changes to my body, I’ve been wanting to move away from everything associated with pre-transition. So I have decided to change my name to Zak, its a name that I’ve always loved and it was the name I really thought about a lot when I changed my name to Dyllan. My middle nephew Leo’s middle name is Zack, so it’s cool we’ll have that little connection.

I told my bro and sister in law the other day and they’re both happy about it. My bro said oh well least I can spell that! lol!!! and I’ve told all my friends and had a good response from everyone which is really awesome. I ordered my deed poll yesterday morning, I’m super excited and it shouldn’t take too long to sort out.

The only people I’ve not told yet is my mum and grandparents… But mother is never happy with anything I do in my life, so I know she won’t be happy. I’m not sure how my grandparents will react. But I’m already anticipating a negative response but in all honesty their opinion really means nothing to me. We have no emotional connection, yes we are family but they’re like strangers to me.

Anyway I’m super happy with my new name, it feels so good and feels really right. It feels like the natural progression of my transition, the next step. I feel really content and peaceful and I’ve not felt like that in a few weeks, so its a nice relief.

That’s all for now 🙂

Week 29 on T

^ This weeks picture

Week 29 on T comparison pic

^ Can’t believe how different I look! so awesome

^ This weeks video

Peace out

Zak

Transition update – Week 23 on T

Woohoo! Today was injection day, that always makes me feel really good. Not that I wasn’t feeling good before but its just something I always really look forward too.

I update twice last week as my GP rang to say my T levels were low and I could inject every 3 weeks, rather then every 4 weeks.

He also wants me to get my injections done at the doctors surgery rather then me doing it and to be honest I’m happy with that. My surgery is literally across the road so its not far to get too and I’ve been struggling to open the testosterone bottles because I have hyper mobility, I just don’t have the power in my hands to crack them open safely. So I don’t mind someone else jabbing my in the butt.

Hopefully now I will see some significant changes, as its all been super slow and very minimal. Although some of my friends don’t agree with that, I don’t see the changes they do and I don’t feel it either. So I’ve been feeling really frustrated with the whole thing, hopefully this will sort it out but I’m still sceptical that its still going to be too low.

I’ve gotta have some more bloods in 9 weeks before my 3rd injection and then another blood test 7 days later. Then we’ll be able to see if my testosterone levels have improved or not.

Other then feeling frustrated with low T levels, everything else have been going alright. My PIP forms are currently being assessed, I so hope I don’t need to go for a face to face assessment, they’re so horrible and so degrading.

My mood has been a lot better then it was in December, I feel much calmer and more settled. Anxiety is still an issue but its not as intense as it was, its far more manageable now.

Week 23 on T

^ This weeks picture

^ This weeks video

Well that’s it for now

Peace out

Dyllan

Transition update – Week 21 on T

I’m writing this a day late this week, as yesterday I was having a bit of a hissy fit. So I ended up just sleeping and binge watching stuff on Netflix all day. I totally needed it and felt much better for it, the two previous nights I’d not slept well at all and I think it all finally caught up with me.

The reason I was having a bit of a moment was because at the weekend I had fraud on my card…again! For the 3rd time in about 3 years, its such an inconvenience being without a card. Also for some reason I had it in my head that I was getting paid this week… But I didn’t because I wasn’t due to get paid until next week URGH! I don’t know what happened, or how it happened but I totally mismanaged my money and was left with £8 for a week. I was totally kicking myself and I was so fucking angry with myself, I could not believe I fucked up so baldy. Some of my lovely friends though offered me money which was so sweet of them, but after much agonising I rang my grandparents and asked them for some money, which felt horrible! I hate asking for help and money especially from family. But thankfully they gave me £80, unfortunately £60 of that went straight into the bank for bills… and I’ve already spent the rest on food. But luckily I’m still owed a bit of money from a friend and my mum, so I won’t be totally skint.

So to say I was stressed was an understatement, I just couldn’t get over how I fucked up so bad. I ended up just sleeping on and off all day long, but I totally needed and I feel loads better today.

Anyway back to the transition stuff, I have noticed that the hair on my thighs have finally started growing and looking darker which is cool, the rest of my legs look like a forest and my armpits too, I’m so chuffed.

Yesterday I had my peak blood test for my testosterone levels and I should get my results tomorrow, which will tell me how often I will need to do my injections.

For a few days after my injection last week my appetite increased but that’s settled down now thankfully and from Fri-Mon my mood and energy was way up which felt good! Feeling a bit more settled and chill today and a bit more grounded.

Week 21 on T

^ This weeks picture

^ This weeks video

That’s all for this week,

Peace out

Dyllan

Transition update – Week 20 on T

5 months on testosterone today! WOOHOO! I did my 6th injection this morning, after the fasting blood tests and everything went well. I got my second bloods next Tuesday, to see how where my testosterone levels are.

Not really sure what else to say… um my facial hair is starting to get long and wild lol! which is pretty cool and I can still hear slight changes in my voice which again is really cool.

I got an appointment with my ears, nose and throat doc soon, I’ve had sinus issues for the past few weeks so I’m hoping he can sort something out. I’ve been getting nosebleeds and just so much snot its ridiculous.

Mood wise, I’ve been ok I suppose. Just been disconnected really, neither up or down. But I suppose that’s a good thing, because I’m not really depressed or anxious, I’m just nothing. I think its a coping mechanism to deal with all the overwhelming feelings and intrusive thoughts.

I’ve been trying really hard to look after myself, so everyday I’ve been meditating and doing something to look after myself. Like today I booked in with a charity to help me with filling in forms for PIP (personal independence payment) and I rang up to claim the forms. I’ve been dreading this for so long but I took the plunge and I’ve got the ball rolling. It actually feels good to have got everything started and I’m just hoping its not as traumatic as last time.

Self care is super hard, its so much easier to look after others. But its so essential , if you don’t take care of yourself, then you can’t take care of others.

 

IMG_6807

^ This weeks picture

^ This weeks video

That’s all for this week

Peace out

Dyllan

Transition update – Week 19 on T

This is my first post of 2018, I survived another year. 2017 wasn’t all bad I mean after all I started testosterone but it has definitely been another challenging year and I know there is more to come. That’s life I suppose but when you have challenges coming at you from all angles 24/7 it gets difficult to deal with. I have totally got this and I am going to put things in place to look after myself.

Nearly 5 months on testosterone! woohoo. Next week I go my 6th injection and my fasting bloods are finally all sorted for this month. So I’ll know how often I need to inject, whether that be every 3 weeks or every 6 weeks, it depends on how high or low my testosterone levels are.

My chest is starting to cause me huge dysphoria, its got worse now I’m on testosterone because I’m starting to look a bit more male then before. I can’t bind my chest either which is stressful and I’m not confident enough to not wear a bra.. something I cannot WAIT to stop wearing. Its super frustrating and I’m already dreading the summer because I’m going to look even more male and wearing vest tops because its hot…my bra will be visible and yeah urgh! can’t it just be spring all summer, cool enough for a t-shirt and shorts but nice and sunny. I’m not sure how I’m going to deal with it… But I suppose I’ll deal with it as it comes…

I feel a huge disconnect but that’s not a bad thing I suppose, it means I’m not really anxious or depressed. I’m not connected with my inner self, it kind of makes things easier to deal with but I don’t really feel anything, just empty, flat, nothing. I suppose its a mechanism to protect myself from myself.

Starting my 2018 back at the community mental health team…urgh! I have an appointment tomorrow morning, flipping 10 am! why so early! My alarm is set for 7 am, I hate rushing around in the morning, plus I have to take the dogs out before I can go anywhere. I’m gonna write some notes to take with me, so I don’t forget anything and I still have print outs of some blogs so I may take them too.

Last week I bought a book called The Self Care Project written by the lady who founded Blurt Foundation and I read it within 5 hours and I had an amazing conversation with Jayne Hardy. Blurt Foundation shared the PDF files for the worksheets that are in the book and yesterday I printed them out and today I bought a new folder and put all the print outs in it. I also ordered some school workbooks to use a my journal, I’m going to try and write every day just to get everything out of my head.

My main goal this year is to find out who I am, since starting testosterone I haven’t really checked in with who I am as a person, if my likes or dislikes have changed or stayed the same. I’m going to work through the self care project book, I aim to make a scrapbook, I aim to write in my journal daily.

So that’s me in 2018.. Hope you all have a great one.

Week 19 on T

^ This weeks picture

^ This is my self care project and journal

 

^ This weeks video

Peace out

Dyllan