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

Grumpy boy

The last couple of weeks have been a bit of a struggle, I’ve been feeling so agitated, grumpy, achy and exhausted. A lot of it has to do with having stopped taking trazadone, which is slowly working its way out of my system.

I’ve been feeling a bit overwhelmed by everything as well. I’ve taken a bit of a step back from life, by not answering messages straight away, as it feels too much and I just need that time and space and also taken a step back from people, some days the thought of having other people near me, especially a lot of people almost feels like a physical pain, which is really hard to explain Even just going to the shops to get food is difficult and I put it off until I really have to go. I also feel like I need a protective bubble around myself as I’m always nervous about people being near me, touching me etc, especially random people I don’t know.

Being just on my own is so much easier, as I don’t have to explain myself, or feel like I have to perform, or be happy or whatever. I can just be grumpy and irritable, without upsetting anyone by accident.

Its just much less pressure and feels freeing. 1:1 with someone isn’t as daunting, I think my social anxiety has really been kicking in due to coming off my meds. But I’m sure with a little time and patience I’ll be alright again. Just need to give myself some space to breathe.

I get so frustrated with myself for feeling grumpy and irritable and I know its usually because I’m trying to stop myself from feeling low, as if I let myself feel low, its a hard work to make myself feel better again. So I fight against just allowing myself to feel how I feel, which just makes the whole process longer, then if I just let myself feel sad in the first place!

I’ve also come to realise that I’m an introvert, I also used the think I was a bit of an extrovert. But I don’t think I am at all. I’m still really quite shy, which has something that has never really changed since I was small. I need my own space to be and recover from social interactions, I prefer my own company, being around lots of people is exhausting.

I think because I am quite good at coming across who is someone who is fairly confident but I’ve spent my life being my own advocate to get what I need from services, mainly hospitals/doctors etc.

But yeah I’m a pretty shy, anxiety filled human lol.

Hopefully in the next few weeks when the trazadone has come out of my system fully, I’ll start to feel a bit better again.

I got a SAD lamp, which I’ve been using most days. Haven’t noticed a difference just yet, but I’ll keep with it and maybe use it in the morning rather then the evening.

Peace out

Zak