Musings of a twenty-something living life with Lupus, EDS, PoTS, CRPS, Raynaud's and depression.

Week one: Day three – I do sports

Everyone was very quiet during this morning’s stretching. Only three days in and the programme is taking it’s toll. Hair was unbrushed, eyes were half closed, yawns were barely stifled. Injuries were starting to appear too. I aggravated my rotator cuff yesterday, my left wrist is sore too. If any stretches cause you pain you can just skip them or they show you an alternative, so it wasn’t a problem. As soon as we finished (it’s a half hour session) we all headed straight back to our rooms for some much needed rest.

At 11.30am I met with my PT and OT for another meeting. I wasn’t told off this time – quiet the opposite. But strangely I’m the only one who has these two-on-one sessions. I’m not sure if it’s because I’m marked as a trouble maker or because my needs are a bit more complex than the rest of the group. I’m a bit scared to ask to be honest! It was a very positive meeting though. They’re pleased with my attitude, they think I’ve understood and accepted why I have to start from the absolute bottom, how hard and slow my recovery is going to be. My OT said “I think you’re going to do really well on this course” which was a nice boost. We took some more baseline timings – how long I could sit comfortably in different chairs with different supports (1 min 56 secs – check me out!!) how long I could stand. We talked about how I would implement what I’m learning when I go home. I was concerned about my bed and my sofa (the only things I have to sit on) because they’re awful for good posture. That pleased them – that I was already thinking ahead of how to use what I’ve been taught. We think I’m going to need to buy a new chair. I’m hoping my parents/grandparents might help out with this. I can’t afford it on my own but I really need to sort my posture out in order to improve.

After lunch we had Lifting and Handling. We had a good eye roll before hand, figuring that it would just be the age old advice that no one listens to; feet shoulder width apart, bend from the knees, back straight etc. And it did start off like that. My nemesis, the PT that “told on me” took the session but she didn’t seem to have a problem with me today. I chipped in when asked for input. I asked only strictly relevant , agreeable questions. The session was held in the mock kitchen and she demonstrated the correct way to bend, lift and reach (boring). But she did have a number of useful tricks and tips for the kitchen:
– buy saucepans with two handles for easier lifting
– carry pans etc over surfaces (rather than walking across the room) so you can put it down if you need to rest
– place pantry items in cardboard boxes within the cupboards so you can just grab the box of herbs for example and bring it down to look through it, rather than rummaging above your head
– keep you most commonly used items out on the kitchen surface
– use mug trees, plate racks etc to store things at waist height
– put the saucepan on the hob and use jugs or cups of water to fill it up to avoid the heavy lifting
– raise the washing up bowl by placing it on an upturned saucepan or bowl to avoid having to hunch over
– invest in kitchen aids like jar openers, silicon oven tray guards, sieving spoons or heat resistant strainer (to lift vegetables out of the saucepan instead on have to lift and pour the water out), and a kettle tipper (I definitely need one of these – give it a google!)
So a helpful session with some good tips.

It was straight to reception after, a taxi was waiting to take us to the aspire centre at Stanmore RNOH. It’s a sports centre that specialises in catering for people with spinal injuries but abled bodied people can use it too. It was quite strange to see so many disabled people in the same place – and all doing some form of exercise! I was extremely sporty before I got ill and it’s one of the things I miss the most from my “old life”. Going into gyms or sports venues now makes me sad, a reminder of what I used to be. And I find them intimidating now. I hardly fit in with the gym bunnies and muscle men when I do 5 minutes on a recumbent bike before collapsing in a pool of my own sweat, gasping for air. So I was relived that for my first time back in a sports hall since playing badminton for my university, I was surround by people just like me.

This was our first interaction with the hospital group and I was surprised by a number of things:
– in the hospital they have a number of groups running at the same time so there were people in their first week, second week and third week
– there were people with a number of different health problems, not just EDS
– the hospital people looked more ill than we did (maybe not a surprise since they’re in hospital) all but 2 people had crutches or used wheelchairs

As someone previously mentioned, there was no effort made by the staff to introduce us to the hospital group. We got the taxi on our own, were led into the sports hall and… That was it. I chatted to a few of the hospital people who commented how much more friendly we were than the previous hotel group (I don’t imagine they were unsociable, it was just an awkward situation). In the sports hall were basket balls, badminton nets, rackets and shuttlecocks, mini golf, magnetic darts, table tennis, bats and balls and loads of perching stools. I was a little taken aback at first, you want me to play basketball?! Have you forgotten what’s wrong with me?! But there was huge variation in what people were capable of and thanks to some encouragement from one of my course mates I gave table tennis a go. It took us a little while to get into the swing of it but we managed a few decent rallies. I managed about 3 mins before I had to lie on the floor, heart going mad, vision blurring, sweating like a pig. One of the techs have me some water and after a while I managed a couple more minutes. That was me pretty much done. I had to sit outside for a while to cool down. I half heartedly played magnetic darts with my group but I was finished off. My group didn’t fare much better, maybe we’ll improve next week.

By the time we got back to the hotel we were exhausted. I ordered room service and it was just what I needed:

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That chocolate torte was DELICIOUS. And now I need to sleep. Preferably forever.

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Week one: Day two – I learn to walk

First stretching session today. It started at 9am. We were told to eat an hour before but I that just wasn’t going to happen. I skipped breakfast (a good choice according to the others) rolled out of bed at 8.45 and walked the 10 steps to the Physio room. Although basic, I enjoyed the stretching. Most of them didn’t “stretch” but the aim is more to get your body moving. Blurry snaps of the exercises included for your viewing pleasure:>
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After a short break I had my first one-on-one Physio session. Because my activity level is zero and I spend almost all my time sitting or lying down we had to start right at the beginning. Lower than my lowest expectations, my exercise programme is learning how to sit, stand and walk properly. She observed me sitting, standing and walking and announced it was all wrong. I stand with my knees locked and hyperextended. My ankles roll out, my arches have collapsed. My pelvis is too tipped down, my back too ached, my shoulders hunch forwards. Even my neck isn’t held right. My comfy sitting position is slumped rather than upright (I get terrible coat hanging pain when sitting straight). This position curves your spine. Spending a lot of time in this position with further stretch those stretchy ligaments of mine and could cause problems in the future. When sitting I stick my neck forwards rather than keeping in it line and tilting my chin down. My walk is all over the place. Every single joint in my body is hypermobile; nothing is where it should be. As a result I don’t use any of the correct muscles when walking (hence the extra effort required, tiring quickly and being in pain). My pelvis rocks up and down with each step. Whilst this is great for the catwalk (or street walk I suppose…) it’s not how healthy people normally walk. I have to learn to tilt my pelvis forwards and backwards with each step. To do this I have to learn to engage my glutes – basically squeeze the bum cheek of the leg that’s on the floor. First try I squeezed both bum cheeks which made me look like I’d shat myself. I prefer the street walker look personally. After a few more attempts I sort of got it but I look like a robot. The girls mercilessly laughed at me as I practiced on the way to dinner. I’ll practice in private from now on I think!

It explains a lot, including why my standard outpatient Physio wasn’t getting me anywhere – strengthening my leg muscles when sitting/lying isn’t going to help if I don’t actually engage those muscles when walking. We practiced sitting with good posture in a chair and on an exercise ball. I can only hold the correct position for 10 seconds before tiring so that’s my starting point: sitting correctly for 10 seconds once during each talk. Booooooring. But I won’t ever progress to actual activity if I don’t master it so I will persevere!

Straight after I had my one-to-one OT session. Thankfully I didn’t have to move for this (I was knackered). We just went over what tasks I struggle with day-to-day – mainly cooking, chores, lifting. I think we’re going to work on them later in the programme but I can’t really remember, all I wanted was my bed.

After lunch (again very nice) we had a hypermobility talk. My vow to keep quiet didn’t last long. After 30 seconds of a frankly painful silence after the question “who knows what hypermobility is” I answered (politely). The talk was really basic, Wikipedia provides more information. Hell, the DWP entry on EDS is more detailed and that’s really saying something. There was a slide on PoTS which I found infuriating – it makes it sound like a minor inconvenience, not the life changing misery it really is. I kept schtum though – aren’t I good?!

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The only thing I learnt was about taping to help with proprioception. It’s not like strapping up injuries, the tape is put around joints that aren’t in the right position and pulls slightly when you hyperextend. It’s like a reminder to hold that joint in the correct position. It sounds useful and the nice young Physio is going to bring some in for us to try.

The last session was Intro in Functional Activity. We talked about our baselines – how long we could sit, stand and walk comfortably and booked in our sessions. I’m doing cooking and arts and crafts, both of which I’m looking forward to. At the end we stood on the wii fit board orbital which told us how balanced our posture was. I shouldn’t have been surprised considering my Physio session how off centre I would be, but still I was disappointed that my score was “4 to the left” when the other girls were only 1 to the left or right. Man I’m rubbish at standing up.

After that I went for a drink with two of the ladies which was very nice. Just got to know each other better and had a good natter. We had dinner together at 6.30: bread and oil, half roast chicken and chips, Eton mess and 2 glasses of wine (one of the non drinkers donated me hers!) SO MUCH FOOD. I waddled back to my room, had a lovely hot bath and was asleep by 10pm. All in all a very good day, certainly much better than the first!

Week one: Day one – I get told off

The first day kicked off with a welcome meeting (pretty standard). We were given big folders with our timetables, print out of the talks and a bunch of other forms I’m currently too tired to look through. It’s pretty comprehensive.

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There’s only 5 of us in our group (normally there’s 8 – this seemed a bit of a waste considering the waiting list but I suppose there’s a reason behind it) We’re all female, we all have EDS. Ages range from 19-46. I was expecting crutches, braces and wheelchairs but there were none. We Don’t Look Sick. To my relief I like everyone in the group. The different ages, different personality types, different degrees of severity makes a nice mix.

The first real talk was called Making Changes. Take home message: you’re here because you want your life to improve. It will only improve if changes are made. Only YOU can make the changes. Got it. Here it is should you need further clarification
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Next up was Pacing. I am the anti pacer. It's possible that my reluctance to embrace pacing was evident to the therapist. We may have been able to get passed that but then I broke the cardinal rule… I questioned the presentation. Apparently questions about the material presented are not welcomed. Any disagreement with the material presented is a huge no no.

According to this presentation our bad (bed) days are the result of pushing through pain on good days. No other explanation is considered. Now, I know that this is pain rehabilitation, but I had presumed that with such a large proportion of EDSers having PoTS (~50%) that it would considered. Or at least understood. Unfortunately that doesn’t seem to be the case.

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Bad (stay in bed) days are the result of pushing through the pain on good days. No other explanation is considered. Even on bad days would should not be lying in bed. We should not even sit with our feet up. When I explained about the blood pooling, blood pressure drops, tachycardia, light-headedness and resulting syncope, I was told that I wouldn’t get this if I stopped lying down. Mmm…

My “negative attitude” was reported to my personal Physio and occupational therapist. I met with them two-on-one after lunch and received my telling off. I was disrupting the group by asking questions, sitting with my legs up up a footstool (something we were told we could do) was having a negative impact on the environment. I had to appreciate the different intellectual understanding amongst the group (pretty insulting to the others I felt – they’re all university educated. I wasn’t asking a technical question…) I know I can be outspoken and overbearing and the thought that I could be ruining the experience for other really upset me, so although I didn’t agree with my telling off, I just took it and apologised.

I also apologised to the group after – I really don’t want to interfere with anyone else’s experience. Far from having annoyed them, they were pretty angry on my behalf (the youngest girl offered to “stand up for me” in the next session, bless!) They felt my questions generated helpful discussion. One girl with PoTS also felt the material was pretty irrelevant. She said she “just glazed over and didn’t listen” but I want more from my stay than that. Another lady had previously started the rehab but had to leave due to an emergency on the 3rd day. She said people had been told off for questioning the relevancy of the advice in that group too. She commented that it feels like school. She nailed it with this comment: “We are meant to passively listen to these presentations, not interact with them.” Discussion and questions should be saved for your course-mates. Who have better insight anyway.

So not the best start! But I’m not going to get a bee in my bonnet about it. Being sulky or feeling slighted will only ruin it for me. So tomorrow I shall be quiet and upright – like a good little patient.

First Impressions.

It’s here! Wonder-rehab is here! …And now I’m scared. Confusion from the start didn’t help. The information I was sent listed 3 different start times: 8am, 9am and 9.30. Apparently the organisers are aware or the conflicting information but haven’t corrected it. I went for 8.45. On arrival we navigated approximately 200 Chinese students who were checking out at the same time. NOISE. CONFUSION. NERVES. Not a dream PoTS combo.

Anyway, we checked in. Very straight forward – choice of newspaper, wake up call, spare key for my partner who they had no problem with staying (I’m not sure whether RNOH strictly allow this but it’s only for 2 nights. I’m just not going to mention it). The hotel isn’t pretty, 60s build looks more like a school than a hotel. Definitely in need of a refurb. They put RNOH groups round the back of the hotel – a bit of a walk from the reception, restaurant and bar but close to the conference rooms and swimming pool. The room was a pleasant surprise; big double bed, wardrobe (but no drawers), dressing table, kettle, mirror, chair, TV, hairdryer, iron (no fridge). Biggest problem in the room: there’s only one plug socket and it’s next to the mirror. I’m very grateful to a friend for warning me to bring an extension lead!

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Yes, I know I’m messy. And I’m too old to have a teddy bear. Don’t judge me.

The bathroom is also better than I expected with a nice big bath. The toilet is a little grotty. Either it’s extremely old or their cleaners are very remiss. I pray for the former.

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The room doesn’t have air con but there are big windows and to top halves open fully. Unfortunately my room is next to a generator so I’m getting the noise of air con with none of the coolness. Not a biggie, I’m a cold PoTSy anyway. This is my view. The pool is on the right. That’s a sunlounger on the grass. Unfortunately most the day it seated a rather overweight old man who was completely unconcerned (unaware?) that half of his wrinkly bum was hanging out his swimming trunks. Nice.

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The leisure facilities are very nice. Pool, sauna, steam room, jacuzzi, gym are free to use throughout your stay. There’s tennis courts and mini goals too. There’s also a spa with not-too-extortionate prices if you fancy a massage.

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The best part is the courtyard which you enter through the bar (although I just walked through the swimming pool because I’m lazy). It’s very pretty, lots of seating and covered areas. Perfect in the sunshine.

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Lunch was impressive. They set out a buffet next to our conference rooms so we don’t have to walk all the way round to the restaurant. Quiche, two types of sandwiches, couscous, chicken drumsticks, salmon, chicken wraps and fruit for dessert. Gluten free and special requests were also catered for. We chose our dinner choices in the morning from the full hotel menu. I went for chicken satay skewers to start, steak and chips for main with Eton mess for dessert. I’m pretty knackered so I’ve asked to have my dinner in my room. It should arrive any second… After I might get round to writing about the actual programme!

They tried to make me go to rehab… And I said “only if you give me wine”

On Monday the 14th I start my pain management/rehabilitation programme run by the Royal National Orthopaedic Hospital Stanmore. I’ve been waiting over a year for this, giving me more than enough time to build it up in my head, pinning all my hopes of recovery on it. Despite being a logical, realistic (if not pessimistic) person I can’t help placing unrealistic expectations on the programme. I catch myself saying “after rehab I’ll be going back to work”, “after rehab I’ll be able to exercise again” I think I’m in for a reality check.

Wonder-rehab had all ready been slightly knocked off it’s pedestal during the assessment when you go to Stanmore, meet the team and go over the programme. The assessment is held in the “conservatory” of the rehab building, the only room available for inmates patients staying at RNOH to use in the downtime. I could deal with the mismatched sofas, ancient board games and a fridge likely to give you e-coli just by looking at it. I’m not going for the entertainment. What I could not deal with however is staying on the ward. NOPE.

Men and women are separated into two wards. There is a separate conservatory for each, you’re not meant to mingle in your free time. No fraternising between the inmates. The wards are small and tightly packed. If you’re the touchy feeling type, good news: You could probably hold hands with with the person in the bed next to you! Meals are served at your bed at set times. There’s 2 bathrooms for each ward. There’s no smoking or drinking allowed onsite. There’s an overpriced newsagents and a costa coffee in the main building that shut at 5pm. There’s nothing else within walking distance. Phone signal is patchy at best, although they have now made the wifi free for patients – it was £3.75 per HOUR. I kid you not.

Contrast the hotel. Own room, double bed, en suite, TV, hair dryer, iron, wifi. Cooked breakfast, snacks provided throughout the day, buffet lunch, full hotel menu to chose your 3 course dinner from. You can order room service or eat in the restaurant. There’s a swimming pool, steam room, sauna, jacuzzi and gym for your use. The best part: a glass of wine is included with your dinner. SOLD.

After some convincing (including an 11th hour threat to cancel 😱) I secured my place in the hotel. I’m hoping to keep a diary of sorts to share my experience and provide an insight to others awaiting a place. I make no promises to be impartial, balanced or positive in my posts. Quite the opposite. This is rehab how I experienced it… Wish me luck!

Presents from my OT

My OT came baring gifts today. A mere two days after my initial visit, today I was provided with two wrist splints (to help EDS floppiness), a grabby stick thing to pick things off the floor, perch stools for the kitchen and bathroom, a shower seat, and a back rest to prop me up in bed. My flat does now resemble an old folks home but I’m pretty impressed with all my new gadgets.

They’re already making my life easier. I made myself some lunch on the hob for the first time in 9 months, maybe longer. I’m writing this propped up in bed with my wrist splints on, and the grabby stick thing is already proving useful for teasing the cat.

I can’t praise the South Birmingham PCT OTs enough. They’re incredibly speedy, friendly, cheerful – everything I wasn’t expecting to be honest. After three years of uphill struggle trying to convince doctors that the PoTS symptoms weren’t just side effects of other medications, begging to be referred to a specialist, badgering admin teams to actually get an appointment, finally getting a diagnosis but being told I faced another 14months before having the tests I need before I can start treatment… I had quite forgotten that there are people out there who actually want to help you. It’s given me a huge boost. I feel so much more supported, enabled and encouraged. It’s a great feeling. Now, back to annoying the cat…

Blogging Begins

I’m completely new to blogging. I’ve never read, followed or even really understood what a blog was until today. I followed a link posted on a PoTS facebook page that led to a blog made by a girl just like me. I’m not convinced that people will be interested in my (mostly mundane) thoughts and experiences. But if the aforementioned blog is anything to go by it seems there just may be an audience interested in the life of twenty-something struggling with multiple chronic illnesses. I can’t promise to be positive, uplifting and interesting, but I will be brutally honest about living life the poorly way.