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

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I wasn’t feeling too perky this morning (the four glasses of wine the night before may have contributed. Oops.) I had a massive plate of scrambled eggs on toast which was delicious (seriously, they must have used 9 eggs – so much protein!!) but things went down hill after that. I managed to kick over a big bottle of water all over the floor, I got a random nosebleed which made me late for stretching – and then I subluxed my rib again.

The warning signs were there in retrospect but I ignored them (shock) I was feeling quite stiff and something didn’t feel quite right when I stretched my shoulders in child pose. When I did the upper body twist and leant forward I felt my rib go. I lied (lay?) down immediately but couldn’t get it back in. The pain was awful. The tech leading the stretch class was brilliant. She called the Physio down straight away and moved a screen around me to give me some privacy. The Physio manipulated the rib back in (OUCH) and I nearly vomited. They maneuvered me into a reasonably comfortable position on my side, propped me up with pillows and called reception to bring me some ice. They offered to call a doctor over from
Stanmore, or some paramedics but I declined both. I’ve put my rib out before and know there nothing else to be done.

Because I’m a hero (!) I did my next session in that position. Somewhat ironically the session was making my set back plan. I’m happy enough knowing what to do when I have a lupus/PoTS/EDS flare up – I just drop back to my original baselines, keep moving as much as possible and build it up again when I feel better. What I didn’t know how to work through was when I dislocate or sublux something. How am I meant to keep doing stuff then?! The plan we came up with is to have someone I can call in an emergency situation to help me immediately. I chose my neighbour as she’s home all the time and frankly loves a bit of drama. Although her busy-bodyness can be annoying she is lovely and is always offering to help me. So I’ll need to have a chat to her when I get back home, make sure she’s ok with that and talk her through what she’ll need to do. To cope with the pain I’ll apply ice, put on the relaxation CD we were given (I’m highly unlikely to do this) get into a comfortable position and take deep breaths every few mins. When the pain subsides I’ll begin gentle movement and gentle stretches. I also need to work on my negative thoughts, instead of saying to myself “I’m a failure, I’m being a wimp, I can’t believe I’ve ruined everything” say “I didn’t do this on purpose, it’s not my fault, this is a set back not a relapse and I will recover and move on”.

After that the PT, OT and tech helped get me sitting, then standing, then slowly walked me back to my room. I’d managed to lock myself out so the tech went and got a spare key, they got me into bed, propped me up on my side again. Got more ice from reception and got my tramadol and diazepam out of my bag for me. They even plugged my phone in, filled up my water bottles and put my ipad close to hand so I had everything I needed. They excused me from the rest of the day which I was really disappointed to miss – cooking session, sports at aspire and a pacing talk (ok, I wasn’t that upset about the pacing talk). After I dosed myself up I fell asleep until 5pm.

On waking I felt gross from the tramadol and diazepam and was in a lot of pain still but I managed to get myself into the bath (the new Dr Salts muscle relaxing bath salts my parents bought me came in handy) got dressed and made it out to dinner with my CM. I even did a few of the more gentle stretches we’d been shown to try and ease the muscle spasm in my shoulders.

So a very annoying set back but I’m pleased I used the tools we’ve been taught, that I pushed through when I normally would have taken to bed for the whole day, and the therapists were very complimentary in the way I dealt with it (even if I thought I was a wimp – still gotta work on that negative thinking!)


Thanks to the threats charms of my mother, I was awarded a very special dispensation to take time out of the course to attend an appointment with Dr Gall, a cardiologist at Kings College. I had been waiting nearly a year for the appointment and if I had cancelled I would have had to wait another year minimum. Normally this isn’t enough to be allowed time off so God only knows how my mother convinced them. The are absolutely militant about you not missing any classes which is understandable to some extent; if people are constantly nipping off for appointments the course just won’t work. But one of my CM was denied permission to attend a post surgery follow up even though she thought something was wrong. It was only when she developed a massive infection that they allowed her to leave which sounds like complete madness. (She had to have another surgery, consequently missing the rest of the programme but was rescheduled a few weeks later, partly I think because RNOH realised they were in the wrong. She is fine now thankfully).

Luckily my appointment was at 12.45 so I only missed an functional activity session that was booked because there were so few of us on this course. I attended stretching, an OT session and a PT session back to back before leaving the hotel at 11am. Plenty of time I thought. Tomtom thought differently. For some reason neither tomtom or apple/google maps works very well in the area around the hotel but I managed to get on the motorway without them. I drove the 9miles down the M1 to staples corner/the north circular where tomtom told me to take the 5th exit. He meant the 4th exit. There was nowhere to turn off and come back on myself for 9 miles so half an hour after I’d left the hotel I was still in watford 😡 (that emoticon needs steam coming out of his ears to accurately portray my feelings at the time). The rest of the journey was pretty stressful even for a London driver like myself. Definitely not one I’d like to repeat in a hurry. I got to kings college bang on 12.45. Raced round the maze of buildings, navigated the nonsensical sign posting and made it to the waiting room just as the consultant called my name. At least he got to see my PoTS symptoms in all their glory I guess…

Dr Gall is lovely. Looks to be in his 40s and promised me he has no plans to retire anytime soon (I’m looking at you Prof Mattihas…) After the basics – taking my medical history and monster list of medications – he explained his approached to PoTS. He is a cardiologist and treats PoTS as such. However, he also refers to a number of consultants in different disciplines to address the multifaceted nature of PoTS. There seems to be a little love lost between himself and Prof M who he described as wanting to be the sole specialist involved in treating PoTS. He warned that I would have to chose between who I wanted to be in charge on my care; NHNN or himself because the advice they give conflicts. As I still haven’t had my follow up after my autonomic testing at NHNN 16 months later, I’m inclined to chose him but he advised me to wait until my appointment next month before I make my decision.

Now the important stuff. There’s a number of medications I take which he feels are exacerbating my PoTS symptoms. He was very diplomatic, saying it wasn’t his prerogative to overrule consultants dealing with my other conditions, and that it would have to be a very considered decision to decide which symptoms took precedent to treat. First up was amitryptiline. I take 25mg at night to help with pain/sleep. It was prescribed by the pain clinic to help with my fibromyalgia. It definitely made a big improvement to my life when I started taking it 6 years ago but it’s not a particularly pleasant drug – it causes weight gain, dry mouth and a groggy feeling the morning after. I had tried reducing before about 18 months ago but my pain hit back with a vengeance. The reason he advises I stop it is because it tends to destabilise blood pressure through the night, causing it to drop. I’m very happy to try tapering it down again though and I think it’s a good place to start (you only change one drug at a time obviously, otherwise you wouldn’t know what change was responsible for what.)

Next on the hit list was nifedipine. I have severe Raynaud’s which was diagnosed at 10 years old. I spent my entire childhood being banned from outdoor playtime during the winter because it was so bad. Nifedipine controls it wonderfully, but it is a vasodilator – basically the opposite of what is needed to treat PoTS. I suspect that this is one that will have to stay.

Contrary to what is recommended on the PoTS UK website, Dr Gall also thinks venlafaxine (which I take to treat major clinical depression) can also make PoTS worse. Venlafaxine is an SNRI (Serotonin–norepinephrine reuptake inhibitor). Serotonin and norepinephrine (also call noradrenalin) both act on mood. SNRIs (duloxetine is another common one) prevent the neurones in the brain from transmitting these hormones which results in a build up of them in the brain, making you feel happier. Noradrenalin can be used to treat hypotension (low blood pressure) which is presumably why it can be useful to PoTS patients. However, noradrenalin is also a stress hormone involved in the sympathetic nervous system and the turning on of the flight or fight response. No good for POTSies. Dr Gall sees no reason why SSRIs should be a problem so I will discuss with my psychiatrist whether a switch is appropriate in my case.

Finally, he advised changing from bisoporol to ivabradine for tachycardia. I’m afraid I didn’t jot down why he prefers this drug (helpful) but if it comes back to me I’ll let you know. He also suggested I ask my lupus consultant about a stronger anticoagulant which might help with my headaches/migraines as the bisoporol was helping with those too.

Dr Gall is very keen for me to see Dr Leshner (sp?) a neurologist, for a sleep study. I bounce between insomnia and hypersomnia regularly but have always put it down to a combination of drugs/being a night owl/boom-bust cycle. Dr Gall suspects I might actually have a sleep disorder (although he was not willing to specify which one). He says sleep disturbance is a commonly overlooked problem in PoTS which makes sense seeing how everything else can be messed up by it. I agreed to the referral. I don’t think they’ll find anything but it seems silly to turn down something that might help. Same goes for his next suggested referral for respiratory physiotherapy. I’d never even heard of this (and I’m yet to research it either) but he said that a lot of PoTS patients take quick, shallow breaths instead of deep slower breaths which leads to sort of hyperventilation and basically even less oxygen than we already have in our blood. I can see the logic, I agreed and I’ll update you further when I know more.

Lastly he referred me to an endocrinologist to check out my sex hormone levels (oestrogen, progesterone, testosterone), my adrenaline/noradrenaline levels, insulin production, cortisone, my thyroid function etc etc etc. This sounds like a fantastic idea (and why didn’t it occur to me/my doctors sooner?!) We know oestrogen plays a role in PoTS and lupus flares, they’ve recently doubled my contraception without checking what my body is doing – which in retrospect sounds a little slapdash but is obviously the norm. I have a tentative PCOS diagnosis but again haven’t had any investigations. I get reactive hypoglycemia, have been on prednisolone constantly for over 6 years, I’ve had thyroid antibodies for years and a strong familial history but it’s never ticked over into hypothyroidism… There’s a lot going on with my body and my medications – checking out my hormones makes perfect sense. I’m looking forward to the referral.

Just a few other notes I scribbled down in the consultation: there isn’t an international consensus that EDS type III causes PoTS. The view that Dr Gall and others take is PoTS arises when an individual has EDS and an underlying neuropathy. It is the neuropathy that is to blame, rather than the EDS. The EDS just worsens/complicates the issue. He stressed that he/they still don’t know exactly what PoTS is or why is occurs in formally healthy people but to my mind this explains why there are people who have EDS but not PoTS and vice versa. A couple of names he mentioned that might be worth looking up:
– Benjamin Levine, an American PoTS and exercise expert
– Satish Raj, a leading Canadian PoTS researcher
– Blair Grubb, an American researcher who supports the use of modafinil to treat PoTS patients with severe fatigue (this article may be interesting)

On the subject of compression tights (a frequently discussed topic on the UK PoTS support group on Facebook which is a wonderful group by the way!) Dr Gall said running compression leggings (sometimes called skins) are an excellent alternative to compression tights. Most importantly he said “don’t obsess over the strength of the compression”. Just find something you are happy to wear and WEAR THEM. Any compression is better than none, any compression will improve your symptoms. The stronger the better but only if you can comfortably get them on and wear them for extended periods of time. The skins are great for keeping cool, absorbing sweat, and looking super sporty…

This is definitely some advice I will be taking. During my stay on the Rehab programme this has become my uniform:

20140805-181737-65857785.jpg For the first time ever my gym clothes have been worn to the gym!! 😂 I’m going to start wearing this instead of my usual lounge clothes/day pyjamas when I leave. It’s easy to wash, comfortable to wear, slightly more socially acceptable than wearing your pjs everyday, and I’m hoping that being in the gear might encourage me to actually do my exercises! The compression leggings will fit right in with my sporty new look!

Apologies for no updates last week, our timetable was rammed and it was so so tiring. Thank you for the concern as to where I’d gone! I will write the days up retrospectively but thought it best to get today’s info down whilst it’s fresh in my mind.

Coming back after a weekend off comes with a mixed bag of emotions. By Friday all you want is home. By Sunday you realise just how hard keeping up all these things is going to be in the real world, and you long to be back at the hotel where everything is easy and planned and you’re told what you’re doing right/wrong.

First session at 10am was Weekend Review. Very positive, I’ll fill you in on the deets in my Weekend Two post. Straight after was a talk on Pain. I can’t say I enjoyed it much or found it particularly useful. We were shown this YouTube clip as an intro into understanding pain. I’ll let you make your own opinions… They couldn’t get the audio to work for the next clip, a TedTalk by Lorimer Moseley, an Australian ‘pain expert’ but the PT explained the basics to us: His approach to chronic pain is referred to as the neuromatrix model, which claims that people who suffer chronic pain have become neurologically sensitised to pain signals. Basically because we’ve been in pain for so long our brains over react to pain stimuli, interpreting the pain as worse than it actually is. Our reaction to this pain affects the way we behave the next time our bodies sense pain (we overreact, think the pain is worse than it is because we’re scared of what happened last time – or something like that. I was beginning to lose interest at this point) We can also grow more pain neurones over time – google “neuroplasticity and pain” for a more scientific explanation than my brain is capable of right now…

I can completely understand how the neuromatrix model of pain fits for conditions like fibromyalgia where there isn’t any physical injury, your body is just screwed up, but I struggle to see how this is relevant for EDS. Dislocations are real injuries and actually we seem to cope with them very well. The PT went on to tell us this anecdote that Lorimer Moseley recounts to explain his theory. I had been pre-warned about this BS before I came on the course but it still angered me that the RNOH use this to explain EDS pain:

Lorimer is Australian and goes on regular hiking expeditions into the outback. One day when on a hike, he felt a sharp sensation in his calf. He ignored it, thinking it was a normal experience of a sharp twig that had stuck into his leg through his sock, scratching him. Several days later he woke in hospital having become only the 2nd person ever to have survived the bite of the deadly “Inland Taipan” snake. He was very lucky and realized how close he had come to death.

Later that year he went on another hike. He felt another scratch on his leg. This time his response was completely different. He reports that he fell down on the ground clutching his leg, shouting “take me to the hospital, I’ve been bitten by a snake!” When his friends calmed him down, they saw that there was in fact, a sharp twig sticking out of his hiking sock! This story indicates that memory, emotions and previous experience can have a very strong influence on how we react to pain.

Fabulous. My joints aren’t really damaged from years of misuse, I’m just imagining they hurt because one time I did have a sore knee and now I’m scared of pain. Or something. Whatever, I much prefer the quotation my equally disgruntled course mate replied with: “Pain is whatever the experiencing person says it is, existing whenever he/she says it does” McCaffery, 1968.

After the pain talk we were free until after lunch. All of us are planning to have an Indian head massage at the spa this week. Today was an easy day so it would have been an ideal time, but Sod’s law the spa is shut on Sundays and Mondays. Hopefully I can fit one in later in the week.

After lunch I had a one-to-one session with my OT. Normally your asked to fill in an activity diary retrospectively for the two weeks prior to our admission (it might be useful to do this before you go in if you don’t keep a calendar/diary because it’s pretty hard to remember) Because I basically did nothing before the course – just sat up in bed all day doing little things to pass the time – we decided it’d be more useful for me to plan the two weeks after I leave the course. This is pretty hard too. I generally play things by ear and do things on short notice so I just planned two days as an example of what I’m planning to do when I leave. The OT then helped me colour code the activities in red, yellow and green for tasks that aggregate or worsen pain/symptoms, tasks that make you aware of the pain/symptoms, and tasks that are relaxing and don’t hurt or make you symptomatic. You should have a mixed of red, yellow and green every day but shouldn’t have blocks of one colour because that indicates a boom and bust cycle. I’d planned my day(s) pretty well:

20140731-064844-24524213.jpg I suspect it’ll be much more difficult in real life but it’s a good way of analysing your days.

After that I had one-to-one PT. I’ve got the hang of body scanning (assessing whether your skeleton is in good posture/alignment) for everything but my knees. I can see or feel when most of my other joints are out of place but my knees are so used to being locked in a hyperextended position I find it really hard to correct it. This is what RNOH use kinesio tape (or k tape) for. Despite seeing it on loads of athletes in the Olympics and claims that it helps with injuries, there isn’t much evidence to suggest it actually does that. At RNOH they use it to draw your attention to a joint or body part that is hyperextending so you can adjust your position. My PT got me to stand with “soft knees” not my usual locked out in a hyperextended position. It feels really weird, like I’m standing with my knees bent but they’re actually straight. I feel unstable and find the position tiring on my quads because I’m actually having to engage them in that position, rather than just hanging off my joints. She then placed the tape across the back of my knees. I can’t feel it when my knees are soft but when I lock them out it pulls slightly on my skin, reminding me not to do it. This is what it looks like:

20140731-104806-38886242.jpg The branded K tape is quite expensive and not particularly more useful than your bog standard tape which the PT used on me. The bottom layer is a porous tape which you can use alone but it didn’t provide enough resistance for me so there’s a tougher tape over the top. The tougher tape can irritate your skin so if you do need it, put it over the porous tape. Here’s some pics of the tape, hopefully you can make out the brand (you can get it in boots apparently). I’ll post the links when I find and buy my own.



Less faff returning to the hotel this week. I checked in at 9am (after navigating through another two coach loads of Chinese students – we’ve worked out they’re here to visit the Harry Potter set) I requested the same room as before and they obliged. I unpacked, settled in and then headed to the first talk at 10am, Weekend Review. We discussed our goals and whether we achieved them openly and chipped in with ideas on how we could have done things differently for goals we didn’t achieve – see my Weekend One post for more info on mine. This is the plus side of having such a small group – we’re able to discuss things in more depth and support each other more.

Straight after was the misleadingly named Foiling a Flare Up Talk. “Foiling” means stopping something but thankfully RNOH realise that even when we do everything “correctly” there will still be times when our pain worsens. Life doesn’t stop. So they come up with a personalised plan for you to take away and use in those times. The talk emphasised that flare ups are temporary setbacks, they may require us to reset our activity levels back to our baselines but we should continue to move and stretch even at our worst and pace up again from there. The techniques to use in a flare up are pretty obvious:
Keep up correct posture
Pace rest and movement accordingly
Communicating our issues with others
Identifying triggers
Staying positive
Re-reading the course material.
No mention of pain medication there but they can’t prescribe or comment on your medication so perhaps that’s why.

Straight into another talk after that: Anatomy and Healing. By this time I had been sitting upright for 2hours and I started to feel PoTSy, despite getting up and moving and guzzling salt and water. I asked to lie down in the room briefly (5 mins) and then slowly sat up and returned to my seat. POTS expertly demonstrated that no matter what RNOH say, sometimes you really need to lie down for longer. It took one of my course mates (a nurse) to notice that I’d gone very pale, shakey and was clearly struggling before the PT conceded that I needed to lie down again. 20 mins more on the floor and I was much better. The actual talk was fairly interesting, I enjoy the physiology bits. I can post photos of the slides if anyone wants them.

After we had lunch (cheese and ham panini with vegetable crisps) and then I had a little break before physio. The session was really good. I’ve nailed posture, holding the position correctly for much longer without pain or tiredness. I can do it standing, siting on a chair or on the floor and I’ve found it’s coming naturally. Rather than having to remember to sit with correct posture and reverting back to slouched after a few minutes, now my normal is good posture. When I tire I get up and move or stretch (I own you, pacing!!) and I allow myself to slouch for short periods now and then. The slouch is definitely starting to feel abnormal! We worked on my walking more too. I had been struggling to do it correctly without looking like a robot as there was so much to think about. The new Physio I’ve been handed over too made it much simpler: all I had to do to start with was engage my core. Sounds simple enough – and I could do it. Except I couldn’t engage my core, walk AND breathe all at the same time. I was tensing my whole upper body, not moving my arms and holding my breath. I wasn’t swinging my hips out though – small victories!! After a lot of practice I did actually get it, and although I have to actively concentrate on it I can walk properly now. Yippee!! Some praise and encouragement rounded my day off nicely. I really think I’m starting to show improvement 😀

I have cooking class on Tuesday which you have to bring your own ingredients in for. One of my course mates (CM from now on) very kindly drove me to tescos and we actually used our pacing skills. In the real world!! We parked in the disabled bay, got a trolley for my CM to lean on/help steady her walking and took it very slowly. We only went to the aisles we needed rather than walking the whole way round, we had little rest breaks and most importantly we sat down at a cafe and had a drink before we headed home. Pretty pleased with myself for implementing a tool that goes completely against my nature, but it did the trick. I didn’t faint, wobble or feel terrible and it’s a long time since I’ve been able to say that after a shopping trip! Feeling really positive about the changes. Bring on the rest of the week!

My dream of spending the weekend comatose was unceremoniously shattered by my PT and OT on Thursday during my goal setting session. As much as I longed to crawl into my bed and stay there, I quickly understood the need to put what we’d learnt into practice during our everyday life. The RNOH staff completely understand how difficult it is to go home and try to do everything differently. In our packs is a letter to friends and family, explaining we need their encouragement and support:br />

I'm lucky to have very supportive friends and family but even so, this letter feels like validation. I feel I can say "this programme is really hard, making these changes long term is going to take a lot of determination, I need your help and support. Look – the doctor said so!!"

My weekend goals were:
1) Get up and dressed by 12pm and don’t return to bed until night time.
I managed to get up and changed out of my pjs by 12 on both days. I stayed out of bed all day on Saturday, but had to retire at 9pm due to overdoing it slightly 😳 On Sunday I had a lie down for an hour in the afternoon as I only got 4 hours sleep the night before (the heat and my restless legs were awful!) My Physio says I can still call this a win though – it’s such a big improvement just to be out of bed. I’m really pleased with myself but I’m also just waiting for the inevitable crash. The team say there won’t be a crash if I pace properly. I hope they’re right.
2) Research the Backfriend posture aid.
Tick. My grandma is buying me one this week, I’m a lucky girl.
3) Practice walking for 5 minutes on Saturday and Sunday.
Tick. But I still look ridiculous trying to walk properly. More practice needed.
4) Complete my stretching on both days.
I did some stretches on both days but could have tried harder for that one. Only half a tick.
5) Attend one social event focusing on pacing around the event and working on my posture when out.
So I may have over done it on this one. I went to a family BBQ for a couple of hours, paced well before and during and kept my good posture up. From there I went straight to the pub with my partner. I chose the most suitable chair to help with my posture BUT I started to tire and should have gone home. Instead I pushed on and went to dinner afterwards. I only made it half was through the main course before I hit the wall. Hard. We had to call a taxi and leave before dessert. I’m annoyed with myself for overdoing it again, it ruined the evening for my partner and we could have done with a date night. I just find pacing so hard to implement. My Physio says to focus on the positives – I was really good with my posture – and learn from the mistakes rather than beating myself up about it. We discussed ways I could have planned the day better: I could have just gone to the BBQ and cancelled our dinner plans (boring). I could have left the BBQ earlier, gone home for a rest, and then gone out. Or I could have rested more at the BBQ, saving my energy for dinner.
6) Set my walking baseline (how long I can walk before the pain starts) on my way to dinner.
This one I didn’t manage because my plans changed, but I did do some walking (through the pain – oops) so it’s ok.

My Physio was really pleased and I’m proud of myself too. Being out of bed all weekend is an achievement on it’s own. Managing it after a week on the programme and actually doing stuff as well is, well, pretty incredible! Here’s hoping I can keep it up for week two!! 😊

Thank god for DIY stretching on Friday morning. I opted to saved my stretching for later in the day to catch up on some well needed sleep. Fridays are half days so you can go home at 12.30, or stick around for lunch and then leave.

We just had two classes today; Posture and Sleep Bingo. Posture just went over what we’ve covered with our Physios, no new info but we got to try out a number of posture aids. The best for me is the “Back Friend” pictured below:

I find it really comfortable (no sticky out lumbar bit) the high back helps my proprioception – being able to feel something by my shoulder helps me notice when my posture had slipped so I can adjust it accordingly. The back friend is portable and can be used on any chair (including the sofa and car). It’s not cheap though and it’s not something the NHS provide. The cheapest we could find it for was directly from the maker. It’s £51.25 ex VAT plus delivery. I will get one despite the cost, I consider it essential to sort my posture out and progress from there.

Straight after Posture was Sleep Bingo. Rather like a game you’d give primary school children to play, we each had a card with pictures on and we crossed the off as they were picked out of the bag. The prize was a relaxation CD made by one of the Physios. I think we would have preferred a nap. As each picture was pulled out we had to say whether it was good for sleep or bad for sleep. A little patronising to be honest. To summarise what you already know:

Good for sleep:
– Cool bedroom
– Milky drink
– Carby snack (but not sugary, think oatcakes. Yum)
– Complete darkness in the bedroom
– Writing down a to do list or a list of worries to get them out of your head before you sleep (this is much more likely to send me into a full on “OMG I’ve got so much to do/my life is a mess” melt down than help me sleep but I kept my mouth shut)
– Going to bed at the same time each night, waking at the same time each morning. Weekend lie ins should only be an hour longer than your usual wake up time.
– Fresh air
– Exercise (about 4 hours before hand)
– A warm bath (your temperature drops quickly after a bath which helps you sleep)

Bad for sleep:
– Smoking (nicotine is a stimulant)
– Caffeine (as above) they recommend not drinking caffeine (including fizzy drinks and chocolate)
– Alcohol – although it can make you sleepy it causes poor sleep
– Using your phone before bed (the blue light emitted from electronic devices is particularly bad for us)
– Naps – in direct contrast to advice from ALL my consultants, naps are bad. Do not have naps. NO COMMENT.
– Being a night owl. I’m not really sure this is something you can change, my whole family leans towards being nocturnal. A lot of POTsies I’ve spoken to feel much better in the evenings and lupus stiffness is well documented as being much worse in the mornings than afternoon/evening. That said, getting your sleep cycle in sync with daylight is preferable. Sunlight affects your serotonin and melatonin levels, the hormones that control your sleep/wake cycle.

Once that high octane game was over we were FREEEEEEEE! A little thing to note here: you have to check out of your room by 11am (something the neglected to tell us until we asked) sessions start at 10am so you have to be out of your room by then really. They let you bring your bags into the conference rooms during the talk but they locked the room and left the hotel as soon so the session ended around 11.30. You can leave straight away but lunch is provided that day too at 12.30pm, which we chose to have. Thankfully one of my course mates was staying for the weekend and let us stash our bags in her room. A bunch of disabled people lugging a weeks worth of gear through the restaurant was not a spectacle I wanted to be part of.

After lunch in beer garden, my boyfriend packed up the car and drove me home. Strictly adhering to all that I’ve learnt(!) I had a glass of wine, a cigarette, chucked on my bikini and promptly fell asleep face down on the grass for 4 hours. I awoke sunburnt and groggy, slapped on some after sun, went to bed and slept harder than I’ve ever slept before. Zzzzzzzzzzzzzzzz………

A detail I left out yesterday was we had our first dropout. A second followed closely behind. There are now only three of us left in the hunger games programme, the smallest group they’ve ever had. There was some concern among our group that we would be disbanded or worse, sent to the hospital. But the PTs reassured us that the hotel costs are paid up, we’ll continue. I’m being handed over from one team to another however. Each PT and OT looks after four people. I had my own PT and OT and the others shared the rest (we still had the same amount of sessions) but with only three of us I’m being handed over and my PT and OT are being put to work at the hospital for the sake of finances. It’s not ideal obviously, and they apologised but I don’t really mind. It definitely makes sense not to waste resources, my starting point is so low it’s not like mine is a complicated programme and to be brutally honest I probably prefer the other team 😳

The girls who left were very young, at university and were able to play sport, work, socialise and generally live pretty normal lives. They found the talks boring (shock) and the physical side not challenging enough. One was gluten free and was disappointed with the limited menu options (although the other gluten free lady feels the food choice is excellent). Both were homesick. I think they were frustrated by the cornerstones of the programme: retrain your body to adopt correct posture in all positions, use correct lifting and handling to avoid injuries, keep exercise gentle and frequent and pace pace pace. I can definitely understand why they left when I think of my 19 year old self – but I can’t help but think it’s a terrible waste. They might not get this opportunity again, adopting correct postures now etc might help them avoid worse pain in the future… And what about all those people desperately waiting for a place? The NHS don’t get a refund from the hotel, it’s paid up, those places are lost. I don’t blame the girls themselves, but I think it highlights the need for prospective patients to be presented with more information about the course beforehand. If the girls knew exactly what they’d be doing on the course ahead of time perhaps they wouldn’t have attended in the first place.

The dynamic of the group has obviously changed as a result. I’m extremely lucky that the remaining ladies are lovely and we get on really well. Everyday ends with us having a drink and a gossip, we’ve got to know each other really well and genuinely hope we keep in touch in the future. As there’s so few of us, we’ve been given more activity classes (I’m cooking three times now) and the talks have become much less formal, we talk about how the issues affect us personally which is a big plus. That said, all of wish that we had a bigger group. We wonder if our experience won’t be as good – less people, less opinions, less support etc. There’s nothing to be done about that though so we’ve vowed no one else will drop out and we’ll see this through. We are definitely making the most of it.

So: Thursday. All of us felt better this morning than yesterday, a welcome surprise. I had room service breakfast (sausage, egg, bacon, potatoes, toast, tea, apple juice, and pain au chocolate!) went to stretching and after a break my onslaught of classes began. At 10.30 we had a Family and Friends talk. This was very useful; discussing the ways chronic illness and pain effects relationships and friendships, tips on how to talk to people about our pain, how to ask for help from loved ones. It’s obviously an emotive area so I think we all felt quite drained by it.

At 11.30 it was time for swimming. Oh how I loath you, swimming! My half hearted attempts to hide were thwarted, the OT hearded me into the changing rooms (nice and clean by the way, showers, toilets, changing stalls, lockers, hair dryer etc) I just hate going swimming. Why anyone would want to submerge themselves in a tepid body of chemically treated piss water, and splash about amongst used plasters is beyond me. I hate it. After some prompting I got into the germ pond which was actually a reasonable temperature. A member of the hotel gym staff is on hand to hand out water and… I’m not sure what else exactly. He looked pretty bored. The pool is closed to the public during our session which is a relief because we looked completely lame. An OAPs water aerobics session was like a marathon compared to what we did. We basically walked from side to side a lot and flapped our arms about under the water. Once we had completed the “exercises” we could do what we wanted. I swam two lengths (hero) and got in the jacuzzi. Then came the hideousness of changing: squirming out of my sopping wet swimming costume in a room of strangers isn’t exactly my favourite past time. And the bit I hate the most: after any form of exertion I just sweat rivers. As fast as I could dry myself I was soaking wet with sweat again. Just gross. After struggling to get my clothes over my damp, clammy skin (a task as easy as trying to put your cat in a fancy dress costume) it was time for lunch. I took mine to my room in an attempt to hide my bright red sweating face, with mascara smudged eyes and soaking wet hair, from the world. Damn you swimming.

Straight after swimming was lunch. I took mine to my room to minimalism the number of people who saw my bright red sweaty face, mascara smudged eyes and soaking wet hair. I was exhausted but there was no rest for me. Straight after lunch I had a session with the psychologist. These are optional but I thought it best to take advantage as I struggle with depression and have a difficult home life. Luckily there was a Physio/hospital bed that I lay down on during the session. It was helpful to have an opportunity to get things off my chest. Obviously it was emotional draining.

I had yet another session at 3.30. I was really flagging by this point and feeling a little low from discussing difficulty stuff but my course mate bought me a drink in my little break and lifted my spirits. It is wonderful to be around people who really understand. My last session was Goal Setting with my OT and PT. We discussed my hand over (they were very apologetic) and set my Weekend Goals, which I’ll talk about over the weekend. They have me some very positive feedback. I’ve gone from disrupting the class to being an asset apparently! That was nice to hear. After that I joined my course mates for a few drinks before dinner (which we ate outside). All I was good for after that was a quick bath and flopping into bed. A hard day, but a productive one. I’m feeling good.