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 – 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 – Ordering Meds

Every single time I order my Prednisolone they give me the wrong dosage ones! Despite having been on the exact same ones for most of my life!

It’s infuriating because they’ve wasted money as those wrong meds will not be given to another person. It means I then have to go to the GO for the thousandth time and sort it out!

Just organising 10+ medications + hospital appointments is like a full time job, which can be so stressful when I’m not being listened to continuously even though I know exactly what I take and when.

It may seem like a small thing to most people, but it gets beyond infuriating. It wastes everyone’s time.

I do see my specialist on Thursday, so I’m going to get him to write my GP a letter to say exactly what dose pills I am meant to be on and have always taken. Hopefully this will clear up the confusion, which started when I started tapering off the steroids last year, but I had to go back onto them when I had surgery in August.

Anyway hopefully this ongoing problem will get sorted soon.

Peace out

Zak

Disassociation and other stuff

I’m not sure this post will make much sense, or even have a point lol. But I just need to write things out and hopefully help sort through the mass of thoughts that race through my brain every second of every day.

I’m going to try and make sense of everything, by sorting through things bit by bit.

I’ll start with an update about my weird breath holding thing… basically I’m still doing it and its still frustrating. Nothing works so I’m just trying to ignore it as trying to fix it makes it worse.

I do it the most when I’m feeling tense, which at the moment seems like a lot. I find myself sat on the sofa scrunched up, my whole body is tense and I’m just unable to move, unable to get out of my head. I can sit like that for hours, which I know is disassociation but in a different form then what I’ve experienced before.

This disassociation feels more like an internal struggle, I’d much rather feel all floaty and out of my body, as I feel weightless. But this is so intense and physically hurts my whole body and I feel like I have no control.

When I become aware of how I’m so tense and scrunched up, I try my best to relax my body but I feel so achy after, its hard to get away from this internal struggle.

I also keep getting stuck endlessly and mindlessly scrolling through social media, again feeling really tense and again with chunks of time passing by.

It feels like apart of my brain has just switched off and gone to sleep, which is a simple way to describe what disassociation is. It’s your brains way of protecting you, which in itself in super interesting. But I feel that there is still a small part of my brain that’s awake and shouting to wake the rest of my brain up, which is causing this internal struggle. Because even though I’ve disassociated, my brain hasn’t entirely shut off, so I have an awareness but I’m unable to do anything. I feel like I’m trapped inside my body, its really weird.

I can be sat down, all scrunched up know I need to get up and move because I have stuff to do and but I just cannot move, I’m glued in place. The small voice just isn’t loud enough to wake my brain up, but I can still hear it shouting at me. Which makes me feel even more tense and frustrated because I’m not in control, I cannot make myself move until my brain wakes up again.

I don’t really know if this will change, maybe it means I’m slowing healing the parts of me that needed to disassociate, maybe it doesn’t, I’m not sure.

Hopefully in time, this will improve or at least I’ll go back to fully disassociating.

I’m feeling more tense this week for a few reasons, I’ve come off trazadone, as I felt I no longer needed it, I’m sleeping better and despite everything I’ve just described I’m feeling better too. But the withdrawals of trazadone can make you feel more agitated and I think that’s really hit me this week. Also two weeks ago I had a pretty big hit of testosterone, due to switching over from Sustanon to Nebido and the loading process means having both shots at once! So I think again such a big dose of hormones has really hit this week. I’m sure in time these will both wear off and I’ll start feeling a bit more relaxed.

I’m still struggling to feel connected to myself, which goes back to the disassociation, but also apart of the gender dysphoria as well.

I think when I took a step back from people in my life and took stock of everything, I took a step back from myself and forgot to step back in again.

I feel a bit out of place, a bit out of sorts and just a bit weird. I’m slowly working towards getting back to myself. But I think I’ve always had this disconnect with myself, the gap feels bigger then before.

Talking about this subject in counselling is helping me understand it a bit more, which has been helpful. This week I learnt that my high tolerance to medications could be linked to the disassociation which is really interesting. Even CBD oil, does nothing for me, natural remedies don’t work for me and I’m really resistant to most medications. When I started taking tramadol, I don’t ever remember it making me feel high, like how it makes most people feel. This is definitely something I want to look more into, as its fascinating and I want to be able to react to meds like everyone else does. I also know a high tolerance to medications is also linked to hypermobility as well, which I have. I just want to try and understand my brain better and why it does what it does and if I can help myself in anyway.

I always knew my brain was wired differently to most, but never knew why. I’m still really non the wiser about why I disassociate, as its usually a result of trauma. I’ve not experienced your usual traumatic events like sexual abuse, violence etc. But then my life hasn’t been simple easy, I became ill when I was 6/7 years old, family life wasn’t always easy, my parents divorce was pretty messy but these are the only things I really remember.

My memories aren’t in order and there are huge chunks missing, which again a sign of traumatic event. Maybe it was just a culmination of events throughout my early childhood/teenage years rather then 1 significant event. Sometimes not being able to remember things is frustrating but I know its my brains way of protecting me from bad things.

This week my memory has been awful, its much worse when I’m feeling stressed/tense. It effects my short term memory, I can forget when happened a few hours ago, which is super annoying. If I’m feeling more calm and relaxed my short term memory is better, I have much better recall.

I struggle with routine, I have non negotiable things I do every day, like take my meds, housework, eating, taking the dogs out. Things I need to do to get by. But beyond that I have no interest in the 9-5pm life. Partly because my body doesn’t work that way, my brain certainly doesn’t either. I cannot stand early mornings, I need quiet time to wake up and adjust to the day. My brain certainly takes its time to wake up, its much more active in the evening, early hours of the morning. I like my freedom to do what I need/want to do in order to feel good and take care of my mental and physical health.

I know I have a lot to give this world yet, but I’m not sure what that looks like. Maybe as the year goes on, that will become clearer to me.

I need to keep writing, I keep saying this but I always hold myself back.. Don’t know why I do it.

I can feel myself switching off, running out of focus. So I shall sign off for now.

Hopefully this sheds some light on well me and how I function, which could be useful for those in my life and help them understand me more and maybe it rings a bell with whoever else is reading this.

Peace out

Zak

Another allergic reaction to yet another antibiotic

I’m ALIVE! YAY! although I still look a bit like a zombie because I’m exhausted. But I am more human today thankfully.

I am so glad I didn’t start my antibiotics on Friday, I took them Tues night before going to bed and I woke up early hours Wednesday morning with severe stomach pains and shortly after came sickness and diarrhea. This carried on until just after midday, thankfully it didn’t last any longer because I couldn’t take my pain killers until I could keep water down.

I was in agony from head to toe, I couldn’t stop sleeping, I was freezing, I was virtually blue because I was so cold. I couldn’t get warm, my feet were the worst they were like ice blocks.

Managed to get up long enough to ask my next door neighbour to take the pups out for a wee for me, as I just couldn’t stand up long enough to do it myself and I needed to try and keep warm. He was so great and happily took them out for me and I was so so grateful for that.

My food shopping delivery came and I managed to throw it all into the right places in the kitchen, before collapsing back onto the sofa.

I did manage to stomach some Pepsi and just plain bread before taking my meds and going to bed…yeah cuz I needed more sleep…lol!

I slept like a log last night, the best nights sleep in ages actually. I didn’t wake up till 9 am and I went to sleep at about 11 pm. But I so needed it after being so ill yesterday.

I stayed in bed until just gone half 10am but I’d let scrappy out on the balcony to pee and left my bedroom door open so the cats could come in and the pups could go get a drink or food. It was nice relaxing in bed watching tv with all the animals in bed with me πŸ™‚

I managed to do the housework and do like 3 loads of laundry, the housework took a bit longer then usual because I kept having to stop and sit down. But I did it and felt loads better for it, the flat was an absolute bomb site lol.

Went over the road with the pups and they were off like little rockets bless them, racing around chasing each other. Luckily there are benches over there because again I kept having to sit down because I felt so weak.

After getting back with the pups I thought I better try and eat something filling but plain, so I made myself some rice and I ate it all and felt better for it.

Just relaxed and watched tv, played with the laser pen and made all the animals go crazy lol!

Spent some time playing Lego Dimensions with the new Ghostbusters level pack and the Joker and Harley Quinn team pack. Love this game so much, it always makes me feel happy.

I felt well enough to try to eat a bit of dinner and luckily I had a portion of beef stroganoff that was in the fridge, which is what I was planning on having for dinner yesterday but it was still ok to eat today. I didn’t make anything to go with it though and I’m glad I didn’t because it filled me up just on its own. I feel less weak now and back to my normal self.

After I’d eaten I noticed that my note pad had a list of medications on there that I had written down on Monday after I did my pill box up. This list of medication were ones I needed to re-order but I hadn’t done that yet. I took the pups out for a quick wee first, dropped them back and then went back out to re-order my medications. Glad it’s all sorted and I will be able to pick them up Mon evening.

Just been catching up on internet stuff this evening, I feel loads better then I did this morning, I just feel exhausted…well more then usual anyway lol.

So by my count I am now allergic to 6 antibiotics, which is very frustrating when I need them because of my stupid immune system!

How am I feeling right now? Other then extremely tired, I feel ok. Just relieved that the sickness is over. But yeah feeling ok is better then feeling low.

That’s all from this boy right now, I need to go get some sleep.

Peace out

Batman

Groggy and frustrated

I am feeling so groggy right now amongst other feelings too… *sigh* Just frustrated.

Yesterday was pretty busy. It was good for the most part but also a little disappointing. But it is what it is, there wasn’t anything I could do about it.

I slept ok-ish Thurs night, but woke up really early again. I did have a little rest, it wasn’t really a proper sleep. I then spent most of the morning cleaning the entire flat, only up to Dyllan standard though lol. It wasn’t spotless but at least it was clean and tidy, I just don’t dust.

Had a refreshing shower, got myself dressed and took the pups across the road for a run. We were out for 20 mins, it was so nice out. My friend text me to say she was on her way over, so I took the pups home and got them settled in the hallway, as H and I were going to the new pub for lunch that’s right across the road from me. I met H outside mine.

We had a really nice lunch, the food was lovely. Definitely going there again. I had beer battered cod and nice chunky chips with a pint of Pepsi πŸ™‚ lush. After lunch we had a look around a few shops in town and after we chilled out at mine watching tv. I needed a rest.

I had to head out to meet J from the bus, so H and I got ourselves ready to go, I took the pups with me and we both headed out. We said our goodbyes.

J’s bus was like 20 mins late…which sucked. But while I was waiting bloody scrappy got excited and pulled out my lip ring. But he pulled the whole thing out…I managed to find the ring, but not the ball. Damn dog. When J got here I explained what happened and got him to wait outside the shopping centre with with dogs while I ran in to get a new ball, but all they had was a different colour to the other one, so had to replace both. Went to pay and to my horror I had forgotten my wallet! I wasn’t expecting to go into a shop so I didn’t take it. Just took my keys and phone. Luckily though they know me in there and I said I’ll bring in the money the next day and they were totally cool with that, but I was still embarrassed. What a dick!

J and I let the dogs off for a run across the road from mine, before we went home. Enjoyed the last bit of sunshine πŸ™‚ Dropped the pups home and went to the shop so J could get dinner, I had already eaten a big meal at lunch so I wouldn’t eat dinner.

We came back to mine and just chilled. Caught up on everything too, that was so cool. Was nice to see him again and hang out. I had invited loads of friends over to celebrate my birthday. But pretty much everyone pulled out. Most with a valid reason. Some didn’t even bother to contact me. So ended up just being me and J. That caused real mixed feelings, it was really cool to hang out with J again, we just talked and watched crime stuff, talked about trans stuff too. But kinda sucked too that no one else came, as I was so looking forward to it…but it is what it is I suppose :/ hurt but at least I wasn’t totally alone.

Think I was in bed by 1:30 and maybe asleep by after 2 am.

I slept so well and for just over 8 and a half hours. Felt like way more then that. Felt so crap when I got up 😦 so groggy, really fucking tired and fucking hurt so fucking much, hate this pain. Last few weeks I’ve felt fucking awful the day after my injection. So over all this but there’s nothing I can do πŸ˜₯ which makes it fucking worse.

Just relaxed with J watching Jeremy Kyle, he loves it lol. I got him into it. Eventually got myself showered and dressed and J and I took the pups across the road for a run.

J was hungry and I didn’t have anything in. We went into town and he got lunch, I just got a drink as I wasn’t hungry. Went into the shop to pay the money I owed them. By the time we did this it was time for J to get his bus. Sucks he can’t stay all weekend, but he’s gotta work. Was a bit sad to see him go.

I got home and ended up just sitting for a while, not even doing anything. Just in my own little world totally checked out. Managed to snap out of it and put a film on, I just chilled playing on my tab and eating sweets. After I watched The Bride of Chucky I put on The seed of Chucky. Ended up falling asleep for the entire film lol! I think I watched like the first 10 mins. Totally needed it though, felt so awful.

Only woke up because I got hot, I probably could have slept for longer. It was still nice and sunny out and the pups were all hyper lol so we went across the road for a run and to enjoy the last of the sunshine. Met some other peeps and pups over there, that made scrappy happy playing chase πŸ™‚ fox just barked at them all lol. I dropped the pups back and quickly went to the shop to get dinner.

Again I sat on the sofa and just totally checked out for a bit. Mind its a much nicer place in my own little dream world.

Eventually had dinner and watched The Curse of Chucky, ah I so hope they do a 7th film, I love Chucky.

Just been doing my usual evening thing and watching Adventure time. Can’t be dealing with anything else.

Still feeling really fucking groggy and horrible 😦 feeling a bit let down, a bit low and frustrated. I hope I don’t feel like this tomorrow. Ok maybe I feel a bit lower then just low.

My life revolves around being ill, hospital appointments, side effects of medications and making sure I have enough medication. I am going to run out of Tramadol AGAIN by Mon afternoon, so I am totally fucking freaking out and I NEED it because I hate feeling the withdrawal the pain 😦 So going to have to sort it out Mon morning. Meh this stuff is so stressful, I feel so alone in all this.

Peace out

Batman