- Monday 16th July - I've had a pretty busy day. This morning I had a long conversation over the phone the Genetic Counsellor in preparation for my appointment on Wednesday. I then got washed and dressed and did my make-up and then got some lunch. Then my friend Abi came round for a few hours and we sat and had a good catch-up as we haven't seen each other in a while. I then got my tea with Mandy. I then made final preparations for going out for half 6, packing a picnic blanket and two flasks in a bag and then my friend Spen came and picked me up and we took a drive round the countryside and went to a place called Willows Lakes and we set up the picnic blanket and got out our flasks and had a good chat about all sorts of topics. Got home pretty late so I made myself a cup of tea and then headed to bed.
- Tuesday 17th July - Bit more of a chilled out day as had noting on in the day time so put on my comfy clothes and watched TV and wrote out a load of PostCrossing postcards and replied to some of my pen pals. In the afternoon I got myself ready and did my make-up and at half 6 Spen picked me up and we took a scenic route to Louth and (eventually) found Wetherspoons and went and got something to eat. We went the scenic route back home and got back quite late again so like the night before I made myself a cuppa and went off up to bed.
- Wednesday 18th July - Had a better nights sleep only waking up once for a short while which I was glad of as I had a busy day ahead. I got up and got some breakfast then had a wash at the sink and got dressed and did my make-up (wow, that's 3 days in a row now I've worn make-up!). I then packed my bag and put in some things to eat. Patient transport arrived just before 11.30am and then we got on the ambulance and buckled up and then headed towards Sheffield's Northern General Hospital. We arrived at the EDS Diagnostic Centre in plenty of time so I did some blog related stuff on Instagram; making the most of the free WiFi whilst I waited. I then went in and saw the Dr and a Genetic Counsellor who asked me some questions and they then did a physical exam of my hypermobility. They also took a sample of blood to be sent off for genetic testing and the Genetic Counsellor will get back to me once the results are back. We then headed home and it was a nice straightforward journey. I'm now feeling pretty shattered so I've made myself a coffee and I'm going to have a nap. I've done some updating on my blog uploading last week's 'One Second Every Day' project and started a post about my appointment today.
- Thursday 19th July - This morning I had to be up at 8.20am to make a phone call at 8.30 am but once i made the phonemail I went back to sleep. I then got up and ready fro the day and put make-up on again (!). At 2.40pm I had a check-up with the Asthma Nurse and then Dad and I went to The Range to buy a few bits and bobs and also to have coffee. I then went home and wrote a letter and had a nap on my bed and then had a chilled out rest of the evening.
- Friday 20th July - A fairly quiet day; I was able to sleep in today. I did have some jobs to do but I was quite tired so i just rested on the sops. The evening wasn't very good as I had a VERY long prolonged seizure so that really through me in terms of pain and fatigue. Dad gave me my medication and Mandy made me some toast and a drink. I was exhausted but covered in sweat so with a bit of help I sat in the bath with a small amount of water and a jug just to get clean and then I went to bed.
- Saturday 21st July - Had a lay in as I was shattered from yesterday's seizures and also because I kept waking up with severe joint pain. Today I've not done much as I've been in a lot of pain and had high levels of fatigue. I've gotten reply to a letter from my pen pal Ella and I've managed to do a sticker by numbers picture; apart from that I've just watched television and kept topped up with pain relief and anti-sickness medication. I'm hoping to have the energy to wash my hair before bedtime, even if it's just a shampoo and then spraying leave-in conditioner in it. My Aunt and Uncle from Goathland came over to stay the night as my Uncle was running the Grimsby 10k with Dad tomorrow.
- Sunday 22nd July - Didn't go to church today du to road closures as it was the Grimsby 10k run today. In th afternoon my other Uncle and his girlfriend came round and everyone ate but I was going on a picnic so whilst they ate I packed up the picnic blanket, two flasks, some fruit and made some sandwiches and then sat with the until Spen picked me up at 2pm and we took a drive to Willow Lakes for our picnic. Spen brought crisps and veg sticks and we had our picnic and the weather we great and then we sat in the sun for a bit and then too a scenic drive back home. When I got back home I realised I was a bit sunburnt, oops! I was pretty tired when I got back home so I spent the rest of the day afternoon/evening in the sunroom watching Netflix and dosing. Dad and Mandy went out to a BBQ so I had the house to myself so I enjoyed the quiet - I just get anxious being home alone in case I had a seizure or a fall etc so I just tend to stay on the sofa where I safe(ish).
Gratitude list:
- The NHS and free healthcare
- Medication
- Sunshine
- Being well enough to do things like go out
- Friends and catch-ups
- Quiet
- Patient Transport
- My Dad
- Free WiFi
