It was all fun and games on the ward last night, we had a power cut just before 10pm…the emergency lighting came on in the ward but not in the bathrooms so I got ready for bed in the dark using my phone as a torch! The emergency lighting was stuck on until the power came back so lots of people stayed awake for a while chatting, I eventually managed to drift off to sleep. I woke up feeling pretty awful. I’m currently battling with an ear infection and a fungal infection on my foot. Lucky me. I asked to see the ward Dr and was told she’s catch up with me at some point over the day, I headed off to stretch after accidentally interrupting an MDT meeting to get my cool packs out of the fridge. (they were only half set so I’m guessing the fridge was off line for a fair few hours!)

Stretch class was pretty good but I was feeling rough so I laid down afterwards, my OT found me half asleep on a plinth 5 mins later! We headed into a cubicle and decided today would be a good day to look at my flare up plan. We looked at ways of managing my flare ups and broke them into sections.

PoTS & Fatigue –  I have to increase my salt intake and stay cool, I need to listen to others when they tell me I’m PoTSy. I need to rest and not feel guilty about needing to ease up on activity.

Back Pain – I need to Pace down my activities and make stretching and physio my priority, use TENS and self massage as needed.

Low mood – when my is low I need to use my breathing exercises, practice relaxation, spending time with loved ones and eating chocolate, write down my feelings and look at them analytically.

Brain Fog – Communicate early before my brain is totally fogged in. When I start to feel foggy I need to start wrapping up my activity and rest. I also need to carry a pen and paper and my communication cards with me. and try not to get angry when people don’t understand me (I think I’m making sense but I’m actually talking rubbish)

I finished the session feeling much more positive and with a clearer plan for the future. I’d also had a sob and let out some of the stress I was holding in. I need to stop holding back for other people, sometimes I’m ‘inspirational’ and confident and happy to help and other times I’m foggy, PoTSy, tired and hurty. And thats OK. I don’t have to manage my health perfectly all the time. (just most of it)

I sat around outpatients waiting for physio for a while and cut up some carrot cake for my OT and Physio (it seemed to go down well) After stashing his cake for later we headed down to start my physio session, after explaining I wasn’t feeling very well he went easy on me and did an assessment of my back as opposed to making me do more exercises. My spine is in pretty good shape, I have a lordosis (which I knew about) a wonky disk (which I knew about) and some of my supporting muscles are a bit weak. My main issue is that I have a very tight sacral spine and an anterior pelvic tilt (like I’m deliberately sticking my bum out all the time) and when I flex my back it hinges in my lumbar region as supposed to curving gradually across all the joints.

I got another exercises for it that involves starting on my back with my knees in tabletop position, then while engaging my core and holding my spine and pelvis in a neutral position I have to gradually lower one leg to the floor then back up then the other leg.

I rushed back to the ward after physio was done and made it back with enough time to see the Dr before the relaxation session. Dr lady says I have a fungal issue on my foot (so I get anti-fungal pills) and an ear infection (so I get antibiotic drops or pills or something)

The relaxation session was pretty good but the lady’s voice didn’t really sooth me (although everyone else seemed to like her voice) and I think I prefer the relaxation script I use at home.

After a short rest and some lunch I went to a session on coping strategies with one of the psychology team. The session was about avoiding vicious cycles and was very good, we talked a lot about how people perceive different situations and how perceptions alter reactions etc. I was totally shattered by the end of the session so I went for a power nap. The Dr lady popped to see me again and told me I can’t go swimming till I’ve shifted the ear infection. I guess that solves my problem with overheating in the pool.. i’m going to ask if I can go to the physio gym while everyones swimming, I’ll get a yoga mat and a gym ball and do some of my exercises.

The final session of the day was a the Aspire sports centre, I played some badminton with one of the ladies on the ward and two of the therapy techs. It was really fun and I didn’t feel too bad PoTS wise either. After a little break I played another game and finished the session with some gentle yoga.

Back on the ward my anti-fungal pills have turned up but not my antibiotics, the nurses don’t seem to know what’s going on with them so I’ll ask the pharmacist tomorrow.

Tea was pretty good and I’m definitely planning on an early night! hopefully everyone else on the ward is tired too so it will be quiet! hah

Ciao for now folks!