So yesterday's appointment was a bit different.
Patient Trnaspost arrived to pick me and Dad up. We took a pit stop at Peterborough Services and I had my obligatory Costa along with their mini gluten.dairy free cherry bakewells.
We got there a little late as the crew member diving couldn't find the hospital and I was madly trying to get in touch with literally anyone at UCLH to say we was coming and one our way as the appointment letter said if you arrive late you may be turned away and I desperately didn't want that to happen and have a wasted trip, plus I'd made sure that the appointment was during the summer holidays so Dad could come with me (he's a teacher).
So once we got to UCLH it was a made run, (well, Dad running pushing me in my wheelchair) from the main UCLH building to the Education Centre. We was a little late but we got in most of the session and the physio who took the session is going to email me the power point.
The session covered things like what is hypermobility, pain, symbols and management of symptoms, nutrition and abdominal symptoms, autonomic issues/symptoms and tips for management, posture and footwear (so no more ballet pumps for me!). It also covered the two treatment pathways following the session which is the COPE Pain Management Programme and the Hypermobility Exercise Programme.
We (Dad and I) had a good chat with the physio afterwards, asking things like what of the two treatment options I should do first (I went for the pain management programme first and then to to the excise programme after so hopefully when I do the exercise programme my pain would get in the way so much). I was also anxious about how the exercise programme would affect me M.E and the physio had some knowledge of M.E. and so reassured me that they would work within my capabilities and not push me to breaking point and would build me up slowly at a pace I can tolerate both in terms of my hypermobility and with my other illnesses.
When the physio covered the slides on autonomic issues - things like heart rate, temperature, dizziness - all pre-seizure symptoms so I'm going to trial some of the advice for managing autonomic symptoms like increasing my salt intake (easier said than done as I really don't like salty food), drink more and have smaller meals as the amount of times I have seizures after meals is rediculous but apparently having smaller meals reduces autonomic symptoms as all the blood isn't rushing to to the digestive system.
So all-in-all it was a very productive and valuable day. The physio wasn't sure how long the wait was for the COPE Pain Management Programme but hopefully it won't be too long and then when I've done that I can be referred for the exercise programme.
I left feeling so lucky to be under UCLH now for my hypermobility after so many years of locally hitting brick walls and no one really listening to me or doing anything to help and support me. I have an amazing team of different specialisties that all specialise in hypermobility related complications and other co-mobidities.
Before heading back to the ambulance we took a quick toilet break then whizzed over to the main UCLH building to grab a coffee and a snack and then we set off home.
I had a few seizures on the way back home, probably because I was so tired but travelling via stretcher now for my London trips is defiantly the way forward and I had a nap and I'm loving my new beats headphones as listening to music/audiobooks defiantly help pass the time on long journeys.
Wednesday, 8 August 2018
I cry myself to sleep most nights not knowing what to do, but then I stop and think a while the words "I need you". My mother of...
This afternoon I had my spinal 'Trigger Point Injections' appointment with the Pain Clinic. I had them from my T-spine (middle of th...
Thursday 1st November - Quiet day in the house. I didn't really get up to much. I summed up the energy to have a bath and used a Lush ...