#rnohstanmore

[jaffacat44]

When I was in hospital at Stanmore, @lydiafaitheden19 helped me down to a little lake behind our ward. It was so beautiful and peaceful down there. A real hidden gem #stanmore #rnoh #rnohstanmore #royalnationalorthopaedichospital #hospital #electricwheelchair #spoonie #spoonieproblems #eds #ehlersdanlos #ehlersdanlossyndrome #wheelchairlife #wheelchair #sunny #sunshine #hiddengem #lake (at Royal National Orthopaedic Hospital)

[jaffacat44]

The lake at @rnohnhs Stanmore was so pretty and peaceful #rnoh #rnohstanmore #stanmore #royalnationalorthopaedichospital #hospital #rehabilitation #ehlersdanlossyndrome #ehlersdanlos #eds #hiddengem #lake #peaceful #nature #sunshine #bluesky (at Royal National Orthopaedic Hospital)

[jaffacat44]

These were the beautiful clouds by the lake at Stanmore #rnoh #rnohstanmore #stanmore #clouds #cloudstagram #cloudscape #bluesky #lake #hiddengem #hospital #royalnationalorthopaedichospital #eds #ehlersdanlos #ehlersdanlossyndrome (at Royal National Orthopaedic Hospital)

[jaffacat44]

Monday 22nd May 2017 - I got up really early and my Dad drove me back to @rnohnhs Stanmore. We managed to arrive really early, so I unpacked and rested until the other girls arrived. We started with a weekend review group where we all went through how we'd got on with our weekend goals. Then there was a group about flare-ups, how to cope with them and how to get back on track. After lunch we had a group about goal setting, but I didn't find it massively helpful for me personally. I then had an individual session with Greg, my physio, and we worked on my shoulders because they keep popping out. After my physio session I met up with one of the technicians to do some work on meal prep and cooking. I made this caramelised onion and goats cheese tart and she let me try out some different utensils to see if we could make things easier. I was completely wiped out so went back to the ward, but had a really sharp pain in my stomach that took ages to go away. At dinner I had some of the tart and then went to an art group. I started feeling really funny, itchy and was struggling to breathe so they had to get the on-call doctor, as we thought I was having a mast cell reaction. He prescribed some Piriton, which helped my breathing a bit but I still don't feel great #happy #happyphoto #jenshappyphotos #jenshappyproject #spoonie #spoonieproblems #eds #ehlersdanlos #ehlersdanlossyndrome #pots #dysautonomia #stanmore #rnoh #rnohstanmore #royalnationalorthopaedichospital #hospital #pain #painmanagement #rehabilitation #chronicpain #chronicfatigue #chronicillness #physiotherapy #occupationaltherapy #cooking #mastcellactivationdisorder #allergicreaction (at Royal National Orthopaedic Hospital)

[jaffacat44]

Over on my blog is a post about my first week at @rnohnhs Stanmore for their pain management and rehabilitation programme. I'm there to help with managing my Ehlers-Danlos Syndrome and the pain (and other symptoms) associated with it. Link is in my bio @ehlersdanlosuk #eds #edsuk #ehlersdanlos #ehlersdanlossyndrome #pots #dysautonomia #stanmore #rnoh #rnohstanmore #royalnationalorthopaedichospital #pain #painmanagement #chronicpain #chronicillness #chronicfatigue #hospital #spoonie #spoonieproblems #blog #blogger #bloggers #blogging #lbloggers #lbloggersuk

[jaffacat44]

Sunday 21st May 2017 - This morning I went to church with my Mum and Dad for Trinity's Christening, as @bekkahcole is her godmother. It was a nice service but the seating was so uncomfortable and I was in a lot of pain. I came home and sorted out my medication ready for my second week at Stanmore next week. I then had my Fortisip and spent a lot of the afternoon writing up my first week at @rnohnhs Stanmore and uploading it to my blog. Once that was up, I did my packing and a couple of physio exercises. I was shattered by that point, so rested and watched some TV. Richard and Lisa came round for dinner, which was nice. I'm really not looking forward to getting up early tomorrow! #happy #happyphoto #jenshappyphotos #jenshappyproject #spoonie #spoonieproblems #eds #ehlersdanlos #ehlersdanlossyndrome #pots #dysautonomia #church #christening #stanmore #rnoh #rnohstanmore #royalnationalorthopaedichospital #pain #painmanagement #rehabilitation #hospital #blog #blogger #bloggers #blogging #physiotherapy

[jaffacat44]

Thursday 18th May 2017 - I felt really groggy when I woke up this morning. We started the day with Your Move, which was nice but my shoulders kept popping out. Then I saw my physio and OT together and we set some goals for over the weekend. After that I saw Elaine, the technician, and we found my baselines for sitting and standing then practised pacing them by doing some colouring. I came back to the ward for a talk about managing medication. After resting and having my Fortisip we went to the swimming pool for water-based physiotherapy. My POTS went crazy as soon as I got in the room and when I got in the water I felt really faint. They got me a chair in the water so I could sit and pace the exercises and also a jug of water to try and help. At the end they wheeled me out of the pool (it's specially adapted for disabled people) and helped me back to the changing room. A few of us went to the cafe for a cuppa, which helped to perk me up a bit after feeling so terrible. I lay down for a while back on the ward, then we all ordered pizza in the evening as a few of the girls are leaving tomorrow. We took silly photos and laughed so much - I haven't laughed like that for as long as I can remember! #happy #happyphoto #jenshappyphotos #jenshappyproject #spoonie #spoonieproblems #eds #ehlersdanlos #ehlersdanlossyndrome #pots #dysautonomia #chronicpain #chronicfatigue #chronicillness #zebra #pain #painmanagement #stanmore #rnoh #rnohstanmore #royalnationalorthopaedichospital #jubileeward #rehabilitation #physiotherapy #occupationaltherapy #hydrotherapy #laughter #laughterishealing (at Royal National Orthopaedic Hospital)

[jaffacat44]

Tuesday 16th May 2017 - I slept surprisingly well and managed to get up, without an alarm, before 7am! After breakfast we had a seated exercise group called Your Move, which was quite relaxing but I popped my shoulders out doing one of the exercises. I then saw my physio, Greg, individually and we decided to focus on my walking first. He assessed my limb strength and watched me walk with my stick, then I practised on the double bars trying to walk 'normally'. After that I saw my OT, Chloe, and we went through an assessment to work out what we need to focus on. I rested back on the ward until lunch and then, after lunch, we had a group session about relaxation. I saw the psychologist but it wasn't really what I'd expected. He asked some odd questions like whether I thought I was ill and who my favourite Paralympian was, and said if I wanted to see him again I needed to ask. I guess I thought we would have regular sessions over the three weeks, but I might ask if I can see him again. I had a nap and then went to a talk about pain. I've felt so sick all day and dinner just made it worse. One of the girls suggested having a shower and a pamper, so I used a few skincare products, which made me feel a bit better. This evening I played cards with some of the girls and that cheered me up #happy #happyphoto #jenshappyphotos #jenshappyproject #spoonie #spoonieproblems #eds #ehlersdanlos #ehlersdanlossyndrome #pots #dysautonomia #stanmore #rnoh #rnohstanmore #royalnationalorthopaedichospital #rehabilitation #pain #painmanagement #chronicpain #jubileeward #beauty #skincare #skincareroutine (at Royal National Orthopaedic Hospital)

[jaffacat44]

A blog post about my third week at Stanmore is now up - link is in my bio. What else would you like to know about my experience of Stanmore? Let me know and I'll get writing! @rnohnhs #blog #blogger #bloggers #blogging #healthblogger #healthbloggers #healthblog #bbloggers #bbloggersuk #lbloggers #lbloggersuk #fbloggers #fbloggersuk #stanmore #rnoh #rnohstanmore #royalnationalorthopaedichospital #rehabilitation #painmanagement #pain #chronicpain #ehlersdanlos #ehlersdanlossyndrome #eds #pots #dysautonomia #wheelchair #disabled #disability #hospital (at Royal National Orthopaedic Hospital)

[jaffacat44]

Tuesday 23rd May 2017 - I woke up not feeling too great, but started the day with Your Move. I then saw Greg, my physio, and we worked on my shoulders and core muscles, which was hard work! After reading my magazine for a while I saw Chloe, my OT, and we talked about improving my sleep. I then had to dash back to the ward for a talk on Anatomy and Healing but I found it a bit hard to relate to, as it wasn't really focussed on people with EDS who heal very slowly. I fell asleep for a bit after drinking my Fortisip. This afternoon I saw Declan, my psychologist, again and had a much better session with him. I had a cry and he told me that it sounds like I've been seriously hurt and let down by professionals in the past. He wants to do all he can to organise the right support for me. After my psychology session we had a talk about the science behind how pain works. I had my dinner but had awful stomach pain and nausea, so made myself a peppermint tea to sip on. We had an eventful evening, as one of the nurses got stuck in the staff toilet, so they had security and estates trying to break the door down! I also came up in another rash, so had to take more Piriton #happy #happyphoto #jenshappyphotos #jenshappyproject #spoonie #spoonieproblems #eds #ehlersdanlos #ehlersdanlossyndrome #pots #dysautonomia #physiotherapy #occupationaltherapy #psychologist #mentalhealth #mentalillness #stanmore #rnohstanmore #rnohstanmore #royalnationalorthopaedichospital #rehabilitation #painmanagement #pain #hospital #gastroparesis #digestiveproblems #dysmotility #pepperminttea #mastcellactivationdisorder (at Royal National Orthopaedic Hospital)

[jaffacat44]

Friday 19th May 2017 - I got up a little later than the rest of the week, which was nice. We were meant to do DIY Your Move but it didn't really happen! I did a bit of packing, then we had a discussion group about what we've learnt so far. I did a bit more packing and then we had a group about postural management, which was really interesting and we got to try out different cushions and supports. I rested on my bed until my Dad picked me up. We went to @sainsburys cafe for a spot of lunch, then drove home via the stables to check on Mickey while @rosiie_alicex is on holiday. He was very cuddly and chilled out. The rest of the afternoon was spent crashed out on the sofa catching up on Hollyoaks - I felt so tired. I've been feeling really wobbly this evening. I think it's because coming home is a reminder that I'll go from having access to amazing treatment and professional support to basically having nothing, and that's quite scary #happy #happyphoto #jenshappyphotos #jenshappyproject #spoonie #spoonieproblems #eds #ehlersdanlos #ehlersdanlossyndrome #pots #dysautonomia #chronicpain #chronicillness #chronicfatigue #zebra #pain #painmanagement #rehabilitation #stanmore #rnoh #rnohstanmore #royalnationalorthopaedichospital #jubileeward #physiotherapy #occupationaltherapy #horse #irishcob #ridingstables #anxiety #depression #mentalhealth (at Burley Lodge Equestrian Centre)