Flu and Covid injections

I booked my flu and covid jabs using the NHS App after the doctor surgery messaged me to tell me I was due them both. 

I selected the options for needing step free access and wheelchair access.

The appointment was at a local pharmacy easy to park near with my blue badge.

My husband took me for the appointment on a cold autumn day. Knowing I woukd be going inside a pharmacy and having to expose my arms I chose not to wear a coat, putting a cardigan, scarf and gloves on. 

When we arrived this is what we saw

 Not step free.

Not wheelchair accessible.

My husband went inside to ask if they had a ramp? No.

So the ogarmacisf looks at me and asks if there's any way I can just get inside. In my 150kg electric chair. No.

Can he lift me inside? No.

So I sat on the pavement in my chair, outside the pharmacy door answering medical confidential questions whilst moving out of the way for the other visitors to the pharmacy (of which only 1 said thankyou) and then had one injection in each arm, whilst outside the pharmacy on the street.

Surely this isn't right?

I had to be there for 10minutes after the injection so he said for my husband to move the car to infront of the pharmacy where he could see me. Then, with me sat inside privacy glass and locked into the car restraints he called my husband into the pharmacy for his injections. Leaving me along in the car. It is a good job I didn't get ill or react to the injections because noone would have heard or seen me.

Why are disabled people treated this way? Such a large organisation as the NHS must be accurate for all. Having this pharmacy listed as step free and wheelchair accessible is someone's mistake that has not only caused me, but other people to be treated on the street. The pharmacist told me some other people had turned up in a wheelchair too when I told him about the booking system for the injections. Surely one wheelchair user telling them this should have been enough to cause a change?

Week 3 post hysterectomy

 Week 3 saw the start of bleeding vaginally. Not a lot, like a light period, something I hadn't had for years. The literature says any bleeding in the first six weeks is considered normal.

I now have glue on only two of the five option sites. The belly button one is the worst for me because the glue is hard and sharp and I hate belly buttons so whenever I feel it digging into me it makes me think of it.

Showers are easier now, almost normal. We still have to use a head rest on my shower chair because I can't yet stretch enough to hold my neck up for a shampoo and condition of my hair. Hopefully next week though.

The menopause symptoms from being in this surgical menopause have begun though. I am having hit flushes where, from nowhere, I feel like someone has put me in a microwave and is heating me up. I get sweaty and need the fan on. Then I get cold. 

The night is the worst though. I get too hot and sweaty, then I put the fan on and then I get too cold. I am awake from 2am to 6am for hours. I am always tired but at the same time fed up if being in the house (putting a seatbelt and wheelchair belt on woukd be too much still) I am desperate to get out. We have taken my dog for a local walk a couple of times when the weather has been nice and I have been in the garden a little. Other than that I have been in my room watching TV, reading books and magazines and scrolling social media. My carer and I have planned lots of things to do when I am able to stand the seatbelts again and feel safe enough in the car. 

Here's to week 4... 

The day of my hysterectomy

 I had panicked and recorded voice notes for my husband and children just in case. I had gone through the children's education and how to submit their work knowing I would be unable to do it post op for a little while and my husband would need to keep on top of that. I had gone through how our finances work again so he could keep up with that too. 

Going in for the operation I was convinced it woukd be cancelled. In my head it wasn't going to happen. Even as the nurse put my gown and stocking on me and the team of doctors and anaesthetist spoke to me about the procedure, checked I was having my cervix and ovaries out and got me to sign the consent form, I was sure it woukd still be cancelled. 

The porter turned up to the me to anaesthetics and the operating theatre, in my head it still wasn't happening. 

Then they put a canula needle in the back of my hand as I lay on the operating bed in the anaesthesia room. An oxygen mask was put on my face and someone pinched my neck. Then the anaesthetist pushed a liquid into my canula and I don't remember anything else.

I woke up to someone telling me to stop pulling my catheter out. I was shaking uncontrollably but not cold and was lying on my side in a hospital bed with a nurse next to me. I had a catheter strapped to my leg, nasal oxygen, a maternity pad stuffed between my legs, a huge belly and a machine squeezing my lower legs. The nurse was checking my blood pressure, temperature and pulse regularly and offered me pain relief but I was OK. This went on a little until the shaking stopped. Then I waited an hour for space on the post op ward. 

On the ward the nurses checked my observations vitals regularly but I developed a temperature. First they took blankets off me, then added a fan, then the doctor  came and I was given blood tests and a blood gas and put on IV antibiotics. I also had a bee sting injection in my leg to stop blood clots. I was being told to drink lots so went through two jugs of water and a jelly I had brought in. My throat was sore so I was glad to have some boiled mint sweets to help with that. My belly was extremely bloated. The fluorescent strip lights started to give me a migraine so I put my sun glasses on and asked if they could pull my   curtains around. They did for a little while but then someone else opened them. I had to keep the nasal oxygen on because my sats dropped too low when they took it away.

I had bad period cramp pain so had IV paracetamol in the evening. Then at night I had more paracetamol tablets for the pain and discomfort. Overnight I started farming which was a relief with the terrible bloating. Apparently to do a laparoscopy they inflate your abdomen with gas. Then they leave the gas in there. So it has to come out. 

My migraine got really bad but my eye mask, ear buds and the paracetamol helped. 

In the morning the catheter was taken out, the leg squeezes stopped and I needed a wee. I didn't have my wheelchair so had to ask a nurse to get it for me. They took ages so I had to ask again. When they brought it and parked it at the foot end of my bed I honestly didn't know how I was going to get to it. It felt so far and my belly was so bloated, I needed a wee, I had pain and noone was there to help me. I knew I shouldn't be lifting anything heavy but I had no choice but to lift myself to move down the bed without flashing anyone and then lift myself into my wheelchair. In the bathroom I had to lift myself on and off the toilet, made more tricky with them wanting me to put a cardboard bowl into the toilet and pee in that so they could measure it. For the first day or so I was weeing bloody coloured wee. That stopped then and it went back to normal.

I was allowed to go hone because I had farted, my temperature had come down a bit, I had peed enough and I had my injections to have nightly for a week, my antibiotics and my paracetamol for pain relief. 

The journey hone was horrific. The pot holes and speed bumps were all magnified by the position of my wheelchair over the rear axle and my bloated belly. I held myself as still as possible with my arms braced on each edge of the car. The seatbelt was up near my chest well away from my belly. 

I had little energy and slept a lot for the first week. I had a shower with the help of my carer the day after being home. She took the wound dressings off for me and we discovered I had reacted to the tape used and had some blistering around them. Every movement made my belly hurt. It was so uncomfortable.

Over about 4 days the bloating wore off but then the antibiotics made me sick. That wore off on day 11 post surgery. Then I was recovering from being sick and the operation. With chronic illnesses that is a lot.

Hysterectomy when disabled

 We got back from holiday on Juky 26th and there were a pile of letters waiting to be opened. Two were from the hospital so took priority over the rest. One was to invite me for pre op screening at the pre assessment centre in the local hospital. The second was a date for my hysterectomy, just 5 weeks away.

I had no more information than that, noone to ask or talk it through with. No mention of how it woukd he done, recovery times, extra help transferring to and from my wheelchair, about the procedure...nothing.

The first appointment was a form filling exercise where the nurse managed to write someone else's hospital number on my notes. I also had blood tests done by two ladies who were more interested in the oats they had just eaten than me.

I was told to return 5 days before the operation date for another blood test because, despite me having three children and therefore having my blood type discovered, the hospital had no record of it and couldn't take my word for it. 

Then I got a phone all two days later to go in and speak to an anaesthetist. I have trouble swallowing and have terrible acid reflux because my oesophagus doesn't work properly. The anaesthetist seemed to think that if I eat lots of protein and do lots of exercise then I will be able to walk post op. He said this to me and my husband whilst I was sat there in my wheelchair with chronic fatigue syndrome, fibromyalgia, functional neurological disorder lots more and cannot walk. So according to him a total hysterectomy was going to make me walk. I'm glad he wasn't doing the operation. 

Happy new year 2021

I can't believe I haven't written here since autumn.

Things have got worse for me medically, which has impacted on my mental health. I am always trying to keep it together, especially over Christmas. 

One of the more recent things we have tried here has been making colour changing lemonade. It was meant for gin, but that doesn't agree with the morphine. Besides, my children can try the lemonade too. 

inside a pretty box were these blue pea flowers. We added them to the lemonade, waited, waited..... And then the liquid was a deep purple.

On adding alcohol slowly (8 year old with a bottle of brandy), the liquid turned more pinkish. Tada!

Also this week. We had a blanket of snow fall during twixmas, then more the next day.

The kids and husband had snowball fights, built a snowman and repeated the snowball fight the next day. 

Our children have enjoyed throwing snowballs for our dopey staffy x to catch. Bless. 

Snow is the best free plaything the world sends us. 

Our Christmas has been lovely. With no extended family, it is always a quiet day. If anything, it was busier than usual with friends of our children coming over everyday. 

We are in tier 4 so are only allowed to meet in our support bubbles. We made sure, back in March last year, one friend is in our support bubble and the other, who practically lives here, is in our childcare bubble. 

We have done our best throughout to keep everyone safe. 

Stay safe xx