❤️ Monday 22nd July
Accidentally oversleep even through my pillow vibrator alarm which has never happened so for the second time I forgot my ECG. I had to call up and profusely apologise once again. Thankfully there was an appointment slot in the afternoon.
When my carer came I was going to have a shower but decided to have a little bath instead as I always feely yucky after being in hospital.
I then rested for the rest of the evening trying to charge up for going to London.
Need to get some college work done this week [note to self].
🏥 Tuesday 23rd July
London bound today for my appointment with Professor Edwards.
I was in the process of waking up an getting out of bed when I got a call from one of the crew that was taking me to say they'd be with me in an hour so I went into panic mode getting ready, breakfast etc inc putting makeup which I wanted to do. Managed to get ready and the crew where late anyway!
Uneventful journey there.
Professor Edwards is lovely; really easy to talk with and very understanding, not just of the physical side of FND but the social and emotional aspects.
It's a very hot day. Had a seizure on the way home so I was pretty zapped from that and the heat.
Got home around 10.20pm so it's been about a 13 hour journey inc my appt.
I got something to eat that wasn't sandwiches and saw to Flop and he wanted a bit of fuss, that was until I presented him with food.
I also came to to some lovely PostCrossing mail and my custom handmade zebra plant pot. I've put my aloe vera in it.
🛌 Wednesday 24th July
My appt today got cancelled which was kind of a good thing as I needed a rest day from yesterday.
This afternoon I've mostly been napping as it so so hot and humid.
I had a few seizures this evening.
All-in-all not a ver interesting day.
This afternoon I've mostly been napping as it so so hot and humid.
I had a few seizures this evening.
All-in-all not a ver interesting day.
🚑 Thursday 25th July
Day time was okay.
The evening was a disaster.
When my carer turned up so found me having seizures so without knowing how long I'd been in that state she called 111 for advice who sent an ambulance.
They came and the confusion was that I've overheated and had a seizure.
My Uncle was here by this point. I'd taken some of my own diazepam and co-codamol and had some tea and things seemed to have calmed down but then I had a few more tonic-clonic seizures, came round and then not long after when into a prolonged episode so me Uncle called 999. They came and gave me some IV diazepam and some of my own stronger pain relief.
I was still spasming but I wanted to stay at home. One of the paramedics helped me into my pj's rather than wait for on-call adult social care.
My Uncle then saw me upstairs to my bedroom and left me.
I just emotionally fed-up as I just want to live a "normal" 26 year old life and be a home on my own without all these seizures and ambulances; not counting the fainting episodes and falls. I just feel a bit despairing.
The evening was a disaster.
When my carer turned up so found me having seizures so without knowing how long I'd been in that state she called 111 for advice who sent an ambulance.
They came and the confusion was that I've overheated and had a seizure.
My Uncle was here by this point. I'd taken some of my own diazepam and co-codamol and had some tea and things seemed to have calmed down but then I had a few more tonic-clonic seizures, came round and then not long after when into a prolonged episode so me Uncle called 999. They came and gave me some IV diazepam and some of my own stronger pain relief.
I was still spasming but I wanted to stay at home. One of the paramedics helped me into my pj's rather than wait for on-call adult social care.
My Uncle then saw me upstairs to my bedroom and left me.
I just emotionally fed-up as I just want to live a "normal" 26 year old life and be a home on my own without all these seizures and ambulances; not counting the fainting episodes and falls. I just feel a bit despairing.
🥄 Friday 26th July
Had a lay-in. Feeling tired and sore and emotionally down after yesterday.
Dad and Mandy where home today.
The weather thankfully was cooler than the past few days so I mostly rested just trying to recharge and rest my body and bring my autonomic system back into order.
Dad and Mandy where home today.
The weather thankfully was cooler than the past few days so I mostly rested just trying to recharge and rest my body and bring my autonomic system back into order.
📖 Saturday 27th July
Didn't do much. Managed to get some college work done, well, I actually inched the course now. I also finished off putting a letter together and printed it out and stick the little bits on. I'm trying to get more creative with my mail again.
💅🏻 Sunday 28th July
Had a lay in. I rested for a while and then this afternoon I finally got round to doing my nails with Shellac™. I love doing my nails and I feel much better for it; it's just finding the energy, but what I did this time was I did one hand and then I had a ½ hour rest and then I did the other hand which worked well.
My step-mum suggested that if I buy some more nail colours it might motivate me to do my nails more so I may save up and treat myself.
The rest of the day has just been resting. Doing my nails and mundane things like getting dressed and other essential is all the energy I've had. I rest so much and yet I'm still so exhausted - the reality of living with M.E. and other chronic illnesses. You must think I'm lazy reading this and how much I write about resting and chilling out and recharging. But believe me, if I had the energy of an able-bodied person the first thing I'd do is go back to Uni in a flash. Sadly for now that's all but a dream.
I did what to do some letter writing but it's nearing bedtime and there's always tomorrow, or the next day.
This afternoon I had two appointments at the GP practise. Being able to get the together saved a lot of time and energy as it's so difficult to leave the house but getting home visits is just near impossible. First off I saw the nurse as a follow up about my asthma tablets which are starting to help so I've been put on them permanently for now.
I then had a short wait so I took my iPad to watch Amazon Prime before seeing my GP.
My new GP is so-far-so-good. I was a bit miffed about my promethazine being stopped as I've been on it years with no issues and it was helping to control my dizziness and nausea. When my GP talks to me I feel we're on an equal level; he know's I'm bright and I understand medical terms so he explained really well heart physiology and about my abnormal heart rhythms, esp my long QT and how the promethazine if I continue would strain my heart even more which would be really dangerous so he's changed my PRN* (*as and when needed) cyclizine to a regular medication and we'll see if that helps.
Before with my GP I felt there was a little hierarchy and there was little explanation over things and I personally like to know and understand things.
With regards to my seizure meds my GP is going to await the call from my neurology Professor, so I'm hoping I can continue to oral diazepam as it really was helping, esp reducing ambulances and helping me self manage.
I said I feel a bit stuck in the middle of a triangle between my psychiatrist and what he's prescribing, what my Professor wants and my GP and I'm in the middle just saying "help, I just want my seizures and symptoms to be managed".
I managed finally to get hold of my new advocate and we're meeting Wednesday so I can bring up that stuck triangle things with her.
Then this afternoon I had some time with my carer. We had some errands to run (apart from medical appointments I haven't been out the house in a while). I went to the dentists to pick up my TMJ brace. Next we headed to Tesco. I went to Timpson's to change the battery in my watch so now the vibrations is back which alerts me more (it's a special 12 alarm medical watch). I also bought some shampoo and conditioner. We then headed to the café for a drink and a rest. I had a yummy iced latté with a shot of caramel. Just before we left I thought I'd check out the magazines and found a new magazine called 'Simply Lettering'. The last stop was the Post Office.
I got locked out and was happy on the grass in the sun until it started raining but some lovely neighbours let me into their home and we had a chat over coffee.
I'm now home recharging and then I plan to do some low-key snail mailing and blogging.
Going out totally knocked it out of me so I've been crashed out for the rest of the day.
My step-mum suggested that if I buy some more nail colours it might motivate me to do my nails more so I may save up and treat myself.
The rest of the day has just been resting. Doing my nails and mundane things like getting dressed and other essential is all the energy I've had. I rest so much and yet I'm still so exhausted - the reality of living with M.E. and other chronic illnesses. You must think I'm lazy reading this and how much I write about resting and chilling out and recharging. But believe me, if I had the energy of an able-bodied person the first thing I'd do is go back to Uni in a flash. Sadly for now that's all but a dream.
I did what to do some letter writing but it's nearing bedtime and there's always tomorrow, or the next day.
"Be gentle with yourself, you're doing the best you can." - Unknown
💊 Monday 29th July
Had a lay in (unintentionally).This afternoon I had two appointments at the GP practise. Being able to get the together saved a lot of time and energy as it's so difficult to leave the house but getting home visits is just near impossible. First off I saw the nurse as a follow up about my asthma tablets which are starting to help so I've been put on them permanently for now.
I then had a short wait so I took my iPad to watch Amazon Prime before seeing my GP.
My new GP is so-far-so-good. I was a bit miffed about my promethazine being stopped as I've been on it years with no issues and it was helping to control my dizziness and nausea. When my GP talks to me I feel we're on an equal level; he know's I'm bright and I understand medical terms so he explained really well heart physiology and about my abnormal heart rhythms, esp my long QT and how the promethazine if I continue would strain my heart even more which would be really dangerous so he's changed my PRN* (*as and when needed) cyclizine to a regular medication and we'll see if that helps.
Before with my GP I felt there was a little hierarchy and there was little explanation over things and I personally like to know and understand things.
With regards to my seizure meds my GP is going to await the call from my neurology Professor, so I'm hoping I can continue to oral diazepam as it really was helping, esp reducing ambulances and helping me self manage.
I said I feel a bit stuck in the middle of a triangle between my psychiatrist and what he's prescribing, what my Professor wants and my GP and I'm in the middle just saying "help, I just want my seizures and symptoms to be managed".
I managed finally to get hold of my new advocate and we're meeting Wednesday so I can bring up that stuck triangle things with her.
🌦 Tuesday 30th July
Got up and out of bed on time this morning (little victories). Just had a chilled morning and then Dad washed my hair for me and then I got some lunch.Then this afternoon I had some time with my carer. We had some errands to run (apart from medical appointments I haven't been out the house in a while). I went to the dentists to pick up my TMJ brace. Next we headed to Tesco. I went to Timpson's to change the battery in my watch so now the vibrations is back which alerts me more (it's a special 12 alarm medical watch). I also bought some shampoo and conditioner. We then headed to the café for a drink and a rest. I had a yummy iced latté with a shot of caramel. Just before we left I thought I'd check out the magazines and found a new magazine called 'Simply Lettering'. The last stop was the Post Office.
I got locked out and was happy on the grass in the sun until it started raining but some lovely neighbours let me into their home and we had a chat over coffee.
I'm now home recharging and then I plan to do some low-key snail mailing and blogging.
Going out totally knocked it out of me so I've been crashed out for the rest of the day.
🌟 Wednesday 31st July
I had a lots of appointments in my diary today which I wasn't looking forward to crashing with PEM after. Thankfully 1 appointment with my new advocate got re-arranged and also my physio is a home so I don't need to spend my spoons on travelling and waiting.
First appointment went well. I've kinda of been avoiding talking about this one, but I've realised that there's no shame in admitting you're going to therapy and I'm slowly making good progress. Its nice being able to talk about living with disabilities and how it affects me.
When I got home I managed to have something to eat and a rest before physio.
Physio went well. We've started doing some arm exercises to help stabilises and strengthen the muscles around my shoulders and also to help me self-propel my wheelchair a bit more which is one of our goals. When also went through and practised my standing exercises. And again with physio slow but good progress.
The rest of the day was just spent recharging and tomorrow will be a nice day off.
First appointment went well. I've kinda of been avoiding talking about this one, but I've realised that there's no shame in admitting you're going to therapy and I'm slowly making good progress. Its nice being able to talk about living with disabilities and how it affects me.
When I got home I managed to have something to eat and a rest before physio.
Physio went well. We've started doing some arm exercises to help stabilises and strengthen the muscles around my shoulders and also to help me self-propel my wheelchair a bit more which is one of our goals. When also went through and practised my standing exercises. And again with physio slow but good progress.
The rest of the day was just spent recharging and tomorrow will be a nice day off.
📹 Video Description
- Monday: Undoing the elastic fastening to my red physio exercises folder.
- Tuesday: Time lapse video of the view out the window travelling down the motorway
- Wednesday: Time lapse vide of me dropping a dissolvable vitamin C tablet into a cup of water
- Thursday: A desktop fan on the floor spinning round
- Friday: Opening a wire draw with contain my pj's and slipper socks
- Saturday: Taking a chance of blue 'fun' by lush (sort of play doh which you use in the bath)
- Sunday: Time lapse video of me painting my nails
- Monday: pouring coffee out of my travel cafetière into a cup
- Tuesday: Closing the blinds. It is dark outside and the blinds are pink in colour
- Wednesday: Looking out the window with it raining outside
