How to prepare yourself for going to hospital.

Hello

The purpose of this article, is to help people who have ME, and are going into hospital, to prepare for it. 

First of all, some things you might need to know, before I tell my story.

The lights in hospital, are bright, so if you are intolerant to light, it would be worth taking some sun glasses in to help with that.


There is noise in the hospital, some of it, is people talking loudly or machines, making noise, if you are noise intolerance, you will need ear defends/ear plugs, or both.


You may find that medical staff don’t know, what ME is, so you need someone there, who can stand up for you, and then, to fight your corner.


I had, had some pain in my kidneys for 2 days, on and off, but didn’t think, anything of it, I had, had a kidney operation, when I was a teenager and just thought it was down to that, the after affect, albeit it decades later, part of ME is that you get pain, right? Well yes, but not in this instance, I just took paracetamol, rested a bit more, and that was it, 2 days later, I went to bed with a funny tummy, again, I put this down to ME, I went to bed, and thought nothing of it.

 In the night, I was up being sick several times, again, I put it down to ME, but then, I started to have a massive seizure, now you are meant to call an ambulance, after having one for 15 minutes, but it was early in the morning, I didn’t want to wake people up, so I just let it continue, plus I was really cold, so once it had stopped, I got a blanket and put it over my duvet, that should sort it I thought, I then started to shake, and had problems breathing, at this point, I called my neighbor, for help, (by now it was mid morning) she had a spare key to my flat for emergencies, and used it, she called 111, and they called an ambulance, they arrived just minutes later. They took my temperature, it was 104, you are going to hospital, so, into the ambulance I went. My neighbor followed behind. When I got to hospital, they took blood tests, and found, I had a severe, urine, and kidney infection, plus sepsis, and the temperature, I was told, if I hadn’t gone to hospital, I would have been dead within 24 hours, ouch.


First lesson to learn, always, check symptoms you may have with your doctor, especially if they are new.


I was then transferred to an overnight ward, where I stayed several days, they did several tests, and saw, that I had a serious problem, and was transferred to a ward, that specialised in kidney issues. While I was on this ward, there was a lot of noise, with a result, I got a lot of seizures, which I normally only have at night, I asked people to speak quietly, but that didn’t work, and I asked medical staff for a side room, or a way of it being quieter, they said there was nothing they could do. I got my parents to bring in my ear defenders, but even those, didn’t solve the problem completely.

As a result of the tests, they decided, to do an operation, to see what was going on, the operation, was meant to last 30 minutes, it lasted 6 hours, I let my parents know, 10 minutes before, I was going down, and asked the nursing staff, to call them, once I was out. It turned out, that I had a kidney stone, a blocked urethra, and two dude kidneys, no wonder, I was in so much pain. I came back and slept through the night, I managed to ring my parents in the morning, and tell them, I was still alive, but  I only managed a whisper. I was left, to fend for myself,  and by the time my parents came in, I was in a really bad way. The nurses, had a template of what was to happen the day after an operation, but thankfully, my parents stepped in and told them, I have had ME for 20 years, and cannot expect me to do that, they both stood their ground, and in the end the nursing staff, let my parents to look after me, they took it in turns, to feed me, help me drink etc, and have rest breaks themselves, they were with me for hours, because I needed them to be.


At night, again, I was left to fend for myself, in fact, I had 3 days, without a wash, or clothes change, I must have stank, (I don’t mean that in a nasty way) thankfully, as time went on, the nurses came on board, they helped, to wash me, feed, and water me, and gradually, I improved. Normally, people come in, one day, and are out 2 days later, not me, I was at the hospital  for 2 weeks. The operation, affected my mobility to the point, that I couldn’t walk at all, but was able to build up a few steps, and then when I was allowed to leave, I went to parents, who again, did everything for me, I gradually improved, day  by day, with their help and encouragement. Within a few weeks, I came home to fend for myself, and that was a great feeling. I am far from recovered from the operation, but I have to go into hospital in a few weeks, for another operation, and then again, in a month, for another.

While in hospital we looked out for each other on the ward, if one of us, was in trouble, we pressed the buzzer, to get them for them, and with some of the people, I am keeping in touch with.


I am grateful, for my neighbor getting help.

My friends and family for their support.

The nurses and doctors, who did come on board, and understood ME more.

Miriam