Disability and style

I think I’ve written about this, or at least touched on it before, but when you are disabled, there is an assumption that you don’t care about your appearance.  But appearance is about far more than looks, it is a way of communicating to the world about who you are.

I am still working on getting back to my own sense of style in terms of my body.  I’ve cracked it with my flat and one of the nicest things someone has said was that my flat basically looks like my soul!  This is despite the boxes of food for my peg, despite the equipment and the wheelchairs and the bed raiser and the trolley and the… Well, you get the picture.

But my body is harder.  You can’t get around needing to wear splints, using a wheelchair, having a tube in you and needing comfort from your clothes.  What I want to do with this post is share with you some people who are doing this (seemingly) well and my own little hacks that I’ve found to help me out.

First of all, a bit about the importance of style for your mental wellbeing:

This entire post was prompted by an article on Disability Horizons so do check that out as well.

I’ve always had a very individual sense of style.  I was the teenager who didn’t care what other people were wearing.  I loved bright colours and was the only person in my sixth form to have DMs, let alone DMs with epic-ly long coloured laces and over the knee stripey socks.

I lost my sense of style at various points in my life – when I started working for example and when my depression was incredibly severe.  But the most acute and painful lose of sense of style, and sense of self, came when my disability started to interfere with how I appeared to the world.

For me this was a gradual process.  I started wearing wrist splints, then finger splints, then knee splints and ankle splints.  Then came the crutches.  Then the wheelchairs.  And alongside this I was having to wear ever more practical clothing.  My beautiful satchel was replaced by a functional rucksack.  I stopped being able to wash my hair very often.  And I stopped being able to do anything with my hair.  I’ve never worn much make up but that was no longer an option.  And then I stopped being able to wear trousers, tights and leggings because I couldn’t pull them down to go to the toilet.

It was this, the loss of my iconicly me tights, that hit the hardest.  I had a huge drawer filled with all different colours and different thicknesses.  I was known for my tights.  And I lost that.  That hurts more than not being able to wear my beautiful black boots or my much loved DMs.  Even as I sit here, I still feel these losses.  It’s like losing a part of yourself.  My DMs and my tights were so much a part of me and how I expressed myself to the world…

But.  Slowly I am working my way back to myself.  My wrist splints are hidden by arm covers which come in a fantastic array of designs and have the added advantage of stopping the velcro from sticking to everything.  These are the ones I have on today:

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To overcome the unwashed hair, I obviously turned to dry shampoo, lush being my preferred choice – it’s more expensive but lasts forever so it’s a good investment and it smells yummy and isn’t a spray which I find difficult to use and also not great for my allergies.  I also turned to hair bands and headscarves.  When my hair hasn’t been cut for a while my fringe annoys me and these have the advantage of a) covering the unwashed hair and b) keeping my hair out of my eyes.  Soft fabric hairbands are really comfy and you can get whatever colour or pattern you want online but I also like the headscarves and hairwraps that cover all your hair and I’ve got mine from ebay.

Jessica Kellgren-Fozard has some great tips for hairstyles when you have limited mobility:

So, working down, we come to clothing and here comfort is really important to me.  I’m either spending a lot of time sitting in my bed, in my riser recliner or in my wheelchair and my clothes must accommodate that.  As I can’t do trousers or leggings I wear a lot of dresses.  I love tshirt style dresses, jumper dresses and knitted skirts.  But this doesn’t mean boycotting style.  What I tend to do is stock up when they’re in fashion or when I find a dress I really like, I’ll buy it in a couple of colours.

And you can always accessorise.  I feel like I’m very unqualified to be telling people about any of this but this is my experience.

Splints… There is no getting round the fact I wear them.  As I said, I cover up my wrist splints but that still leaves fingers, knees and ankles.  I’ve not found a way of making my knee splints any more stylish but my ankles tend to be hidden because I love wearing boots.  I have to buy them a couple of sizes bigger to accommodate the splints and I can’t wear DMs any more because I can’t get my feet in them easily enough with the splints.  What I’ve found works best for me is ranges with a wide option and boots with a full zip down the side.  Unlike putting a foot in a boot, a splinted foot doesn’t have as much give so you need the shoes to do the hard work.

When it comes to my fingers, I was always covered in beautiful silver rings with stones and patterns and then the splints came along and they were replaced by pieces of NHS beige plastic.  You know the colour… And then I found silver ring splints. Mine were from a company which no longer ships to the UK but again, etsy has a wide range and there are other people who sell them.  When I’m out and about, even when I’m in hospital, people compliment me on my rings, thinking that they’re just decorative and that is such an empowering feeling.  They are complimenting me not commenting on my disability.

I am very aware that this post is getting to be pretty long but bear with me…

Next to the matter of my tights, or lack of them… Instead of tights and leggings, these days I wear very long socks.  All the joy of warmth without the difficulty of pulling them down when you go to the toilet.  I get mine from Sock Dreams in the US because they have a fantastic range and, crucially, give you detailed information about length and width at the top.  A lot of long socks assume your legs are the same width all the way up which is obviously not the case for most people!  I also have to wear compression socks from time to time and was very excited to get an email from Sock Dreams this week about their new range.  I’ve also had some great pairs from Compression Sock Shop including a pair of purple spotty ones!  There is no need for compression socks to be boring, let your style shine through them!

I am not always the tidiest of eaters, especially as I can’t always use cutlery… This of course means sticky fingers and I am starting a small collection of lovely, reusable napkins.  I think they are underrated – most of us grab a piece of kitchen roll if we need to – but resuable ones are obviously better for the environment and plus, I’m allergic to paper… Again, I turned to ebay as well as etsy and there are so many great designs out there these days.

Hmm… What else did I want to say…  I don’t remember!  And to be fair, I think this is probably long enough…

In addition to the links through out, check out:

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Feeding tubes: PEG

For short term feeding, NG and NJ tubes tend to be used but for long term artificial feeding, a PEG is one of the main options. PEG stands for percutaneous endoscopic gastrostomy which means it’s inserted with a needle through your skin with the help of an endoscopy and creates an artificial external opening into the stomach. You may also hear this called a g-tube, particularly I think in America.

The process

The process of putting in the PEG is normally very straightforward. You get given some sedation to make you drowsy and then hopefully you remember nothing. But if you’ve had an endoscopy before then it’s much the same except they also make a hole in your tummy which will have been given local anaesthetic. My first attempt didn’t work as my stomach wasn’t quite where it was supposed to be…

When you come round you’ll feel sore, after all you’ve had a hole put in your stomach which goes through skin, fat, muscle and the stomach wall. You may experience trapped wind which is very common after the procedure and there will be pus and fluid around the site. The hospital will advise you about how to care for the site, when you can wash it etc.

If you can, the best thing to do to help yourself feel better is to move around. It’ll hurt but it’ll help. Pelvic floor exercises are another suggestion and I found variations on the knees to chest yoga pose (with gentle rocking back and forth and side to side) and ‘windscreen wiper’ pose helped with pain and with strengthening my core.

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My PEG

I’ve had my PEG exactly four weeks and I’m pretty much pain free around the site. When I had mine inserted I was very weak and had lost a lot of strength and muscle tone etc so I would think if you have the procedure done when you are healthier, you won’t have much recovery time at all.

As well as keeping the site clean, you’ll also need to advance and rotate it at least once a week. You’ll be shown how to do this and it’s really easy. I was a bit worried it would hurt (the tube gets pushed into your tummy and turned so that it doesn’t get stuck in your stomach wall) but it doesn’t. It can feel a bit strange, especially if you think about it too much, but no pain.

The feed

I’ve touched on feed already when I talked about NG and NJ tubes but I wanted to say a bit more. There seems to be a trend in the US to blend your own feed but in the UK I think it’s standard practice to use the packaged bags of feed from nutrition companies.

There are various makes and what you end up with will most likely depend on which company your hospital buys from. Your dietician will work with you to find the feed which meets your nutritional needs and which agrees with your body. It comes in bags and bottles and does not look anything like food. It doesn’t smell nice and it’s a funny colour, but in a lot of cases it’s probably saving your life so these things don’t matter so much.

The feed gets into you via a pump and you and anyone else who might use it can be trained although it’s very straightforward.

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At some point, you will spill some of the feed. In my case, when I was in hospital, the PEG came detached from the feed and it went all over my bed. You may not want to, given it’s likely the middle of the night, but act quickly. The feed dries like cement and it will stain things. Be especially quick with teddies, mine still bears a grudge about the feed which ended up in his ear…!

The other vulnerability to spillage comes if you forget to put the clamp on when you’re putting water or medication down the tube. I have a towel with all my peg equipment so that every time we do something with the tube, we put a towel on my knee.

A lot of people who are on artificial feed are fed overnight. This means it doesn’t impact on your life as much, although if you are being fed during the day there are backpacks and things which can make your life easier.

Eating, or missing eating

“Many of us have odd habits to kick the drive for oral consumption such as gum, flavored drinks, lozenges, hard candies, or even chewing up food and spitting it out!”
Tube Fed Wife

I can eat a little and can drink a lot of stuff so I’m making use of that to get flavour into my life.  For example, ice pops can be made at home in all kinds of flavours.  And crisps which dissolve in your mouth like cheetos and skips can be easy to eat and give you a satisfying crunch.  I’ve been able to go back to eating sweet potato chips provided that I don’t get them too crispy and I don’t try and eat many at once.  Adding in melted cheese also provides some lubrication which can help with swallowing.

If you or someone you know is being fed by a tube, remember that food is often much more than nutrition.  It can be a social activity, it can be routine, it can be celebration and you’ll need to think about how you can enjoy these things despite the feeding tube.

I had a long lead up to my feeding tube so had some time to think about these things and how I would cope with them.  Because I can still eat a little and I can drink, it’s not going to be so hard as it might be.  When I go out with friends I can have a drink and watch them eat.  I’ve got a long history of eating difficulties anyway so I’m used to going for a meal and ending up with just a plate of chips.  This isn’t going to be a big adjustment for me.  Also, my social life doesn’t really revolve around food.  The same is true for celebration.  But if your life does, then having something to suck on for flavour or chewing gum or similar may help you feel more involved or bring your feeding tube into the celebrations!

And there is always the option to chew and discretely spit out your food.  Do it into napkins or take a little tub (with lid) along with you.  If you can have a tiny taster of something then do that, even if it means you’re having ice cream whilst everyone else tucks into a takeaway.

But also, look after yourself.  If you know that your friends are going to your favourite restaurant of all time and that it’s going to be upsetting to be there and not be able to eat, then join them after.  And talk to your friends and family.  This is likely to be an adjustment for them, especially if you always meet for coffee and cake.  Explain what you feel comfortable with and if you aren’t ready for food related socialising, have a think about what else you could do together and how else you could celebrate events.

Feeding Tubes: NG and NJ Tubes

There are various different types of feeding tube which enter your body in different ways and go to different parts of it. I’ve had an NG, NJ and a PEG and I wanted to share some of the things I’ve learnt and tips I’ve picked up as I would have found them useful.

NG Tube

An NG tube goes in through your nose, down your throat and into your stomach. Having it inserted isn’t the nicest of experiences but there are things you can do to make it better. Have music playing to distract you, squeeze the hand of someone, swallow water through a straw as it’s being put in and remember to breathe. Also, you have the right to request a different member of staff if you aren’t comfortable with the person putting it in. My first NG tube was put in by a nurse who thought I was making my issues up, needless to say, she wasn’t very gentle with me. Or at all reassuring. Having a nurse that I was comfortable with, that I liked and that I felt listened to me made the experience a lot easier.

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Me and my NG tube

On one occasion my NG tube placement failed because my nose was blocked. Avoid this! For the next attempt, I got some Halls Soothers to suck on to clear my head. These also came in useful once the tube was in. Because your throat isn’t used to having a plastic tube down it, you will probably feel some discomfort. Sucking on ice pops and cough sweets can help ease this a bit (assuming you can safely manage them, check with your medical team).

I found the NG tube to be uncomfortable the whole time it was in but there are ways of reducing this or at least not making it worse. I found turning my head and keeping it turned for too long led to irritation. Similarly if I talked for too long or if I bent down. Basically anything that would move the tube too much was uncomfortable. But it eased off if I returned to having my head facing forward and my chin up. This applies to sleeping positions as well. They recommend sleeping at a 30 degree angle if you’re being fed via your tube anyway but I found this to be the only position I could actually sleep in from a comfort point of view.

Having fluids or food down an NG tube feels weird, at least at first. Because the temperature of the liquid is different to the temperature of your body, you can feel it moving across your face and then down your throat. The first time this happened I wasn’t expecting it and I started to gag. My body seemed to think that I was drinking but that I wasn’t swallowing and I freaked out. Just breathe gently and get the nurse to talk to you as a distraction. After a while it feels normal and you won’t notice it.

NJ Tube

An NJ is very similar to an NG except it doesn’t go into your stomach, instead it goes further into your digestive system, ending in your duodenum or jejunum. Mine was put in whilst I was sedated so I can’t tell you anything about the procedure but I understand it’s much the same as the NG.

That said, I much preferred my NJ. Perhaps it was because I hadn’t been aware of the insertion but it felt more comfortable and more stable. I think the tubes themselves are softer as well. The disadvantage of an NJ tube is that you can’t have as much feed going in you at once compared with the NG. This is because feed can sit in your stomach and wait to be digested whereas feed from the NJ has nowhere to sit. This meant I was on my feed continuously. Not a major problem but taking a drip stand everywhere can be a pain!

Both the NG and the NJ tubes can feel worse when they ‘hang’ as they pull on the tube inside you. I employed a couple of strategies to take the weight off my tubes. Firstly, I hooked it up and around my hairband. Secondly, and this is a slightly stranger look but works well, is I hooked an elastic band around the tube and used a hair clip to attach it to my hair. This meant it have enough give that I wasn’t pulling the tube if I moved and took the weight off the part of the tube that was down my throat. You might also want to look at ways of taping the tube to your face, some nurses are better than others when it comes to that… I believe you can also get stickers which mean you look less medical – and who doesn’t want a dinosaur on their cheek?!

A note on feed

Your dietitian will probably prescribe you a standard feed. When you first start on it you will probably experience diarrhoea. Depending on your other health issues, you may want to ask the hospital for some incontinence pads. Especially if you’re in hospital and sharing the toilet with other people. As awful as it feels, it’s good to have the back up of the pads. When I was in hospital most recently I was violently sick every time I moved so getting to the toilet was an ordeal and it took ages because I couldn’t walk. This meant getting a nurse who then had to get a commode and then get me to the toilet, providing of course the toilet wasn’t in use.

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My yummy feed…

There are other types of feed out there, if you aren’t getting on with one, talk to the dietitian as they can explore others. For example, the one I was put on to start with was repeating on me and tasted of meat, which as a vegetarian was really unpleasant. If you find the diarrhoea continues, they might explore feeds with higher fibre etc.

Depending on why you needed an NG or NJ tube, you might also still be able to eat and drink. In my case, I could still drink and I collected a range of different flavours and types of drink to keep life interesting. I also craved certain foods and I was able to suck on ice pops. I also sucked on spicy roasted chickpeas for the flavour and salt and then spat them out, discretely I’d like to add! Avoid toffee and you might want to start with moister foods if you’re able to eat.

I’m also going to do a post about my PEG and what I’ve learnt, tips I’ve picked up etc.

Another enforced break

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As much as I’m keen to continue with my nature and writing project, my swallowing issues haven’t been resolved so I’m now quite malnourished and incredibly exhausted.  I’m beyond reading anything more than a few lines long and am on a strict regime of trashy tv.

I am really really hoping that the consultants will take some action soon and get me back on artificial feeding but I am not having great experiences with them.  At the last appointment, I saw a different consultant (again) and despite her having my notes in her hand, she made me start all over again which I was not expecting.  I was not prepared for this and was exhausted and emotional and frustrated and therefore missed out vast chunks of my medical history and other relevant info… That appointment ended with acid tablets (which I’d taken before and which made my swallowing worse), some really foul tasting supplement drinks (which I couldn’t swallow) and a referral to the eating disorder team (despite it not being an eating disorder).  Nothing around my actual problem progressed, we were just firefighting…

Anyway, grumble over for now.  My point is there is going to be a break in posts but I hope to be back soonish with more interesting bird info for you!  Regardless of when things pick up I’m going to stick with birds for a bit longer, wrap up whatever calendar month that is and then move onto the sea, possibly marine life and possibly the water itself, still to be decided.

I am also going to do a giveaway of some of the resources I’ve used.  They’ll be ones that I’ve read and don’t think I’ll re-read or dip back into but there are some great books sitting and waiting patiently for new readers.

Pain scales are a pain in my…

One of the most frustrating things from my stay in hospital is when they asked about pain.  On a scale of one to ten, with ten being the worst pain imaginable, where would you rate yourself when you’re up and moving around?  And when you’re comfortable and resting?  And right now?

Arghhhhh… This question does not work for people with chronic pain.  As I wasn’t actually in for pain I didn’t put much thought into my answers especially after I (politely) challenged a nurse about the uselessness of me answering.  But had I been in for pain related stuff, how would I respond when the first half of that pain scale never really applies to me.  This means I lose nuance and nurses who don’t know what ehlers danlos is look at me funny when I say 5, 6 or 7 – my most common pain scores according to their scale.  I no longer look in pain when my pain is 7 or below.

Also, the expected result was that when I was moving around my pain would be higher than it is when I’m in bed.  But for me that’s often not the case.  I know how to read my body and know when I’m overdoing it and I stop.  Because most of the pain isn’t an instant thing, it’s not like I stand and immediately I’m in agony, I tend to be in more pain when I’ve stopped.  Some of this is adrenaline and some is that I’ve stopped before the pain peaks.

The other really frustrating part of it was hearing other people claim to be at a 10 when they were pretty much fully functional.  In my books, a 10 has you close to passing out or passed out.

But there are options out there for improving this quantitative measure of pain.

Firstly, do the basics and show a patient the pain scale with faces on, it gives a bit more context and helps the patient have a guide to consider.

Although again, for people with chronic pain, the scale shifts.  It takes a hell of a lot of pain to make me cry or even get close to tears these days.

Maybe go one further and use this one from Hyperbole and a Half:

There are also written pain scales which patients might find useful as they don’t just look at the pain but look at the impact of said pain:

0  Pain free
1  Very minor annoyance-occasional minor twinges
2  Minor annoyance-occasional
3  Annoying enough to be distracting
4  Can be ignored if you are really involved in your work, but still distracting,
5  Can’t be ignored for more than 30 minutes.
6  Can’t be ignored for any length of time, but you can still go to work and participate in social activities.
7  Make it difficult to concentrate, interferes with sleep, you can still function with effort
8  Physical activity severely limited. You can read and converse with effort. Nausea and dizziness may occur.
9  Unable to speak, crying out or moaning uncontrollable- pain makes you pass out
10  Unconscious. Pain makes you pass out.
As an aside, according to this particular scale, my pain is always 7 or above…
A similar version exists but with colour coding to help:
Again, I’m a 7 or above most of the time with this one and I regularly hit 8 in the night.. See how unhelpful they are for chronic pain?!
You can also personalise your own pain scale which might be helpful for taking to appointments which are about pain.  There’s a tool online which can help with this and I’d recommend looking at other pain scales as well to get a flavour for things.
There is work going into pain scales, at least in America and I’m hoping that work goes into how the NHS use them as well.  They are a useful tool but they need a lot more tweaking before they can be anywhere near accurate measures of a persons pain.

The ever wise and wonderful Jo Southall has a post on her blog about painscales which I’m considering printing off and handing to the pain clinic next time I go.  Every time I have to fill in the pain scale form and draw on an outline of a body where my pain is, here’s a hint, pretty much everywhere…

As Jo suggests in her blog, much more helpful questions are about how you are coping with your pain, how it is affecting your life and whether it is disrupting your day to day activities.  Not only does this give a clearer picture to the medical practitioner but it also means you can look at making adjustments which will ease those issues caused by pain and in turn you may well make the pain more manageable.

Another post about things which make my life easier!

I’ve done a lot of these posts but I am also continually finding new things which make my life with chronic pain and fatigue easier.  And my condition changes so I need to find new ways of coping.  All the info in the past posts is still really relevant and if you’re new to chronic illness or my blog, I would recommend looking back at them.

If like me, you’re stuck inside, I hope my connecting with nature posts give you some inspiration:

A good mattress.  I’ve written before about the value of a mattress topper and they do make a lot of difference.  But I’ve just bought a new bed and mattress and the difference is amazing!  Although now I stop and think about it, my mattress topper was probably over 5 years old… Everyone has different mattress needs but I have gone with a mammoth mattress and bed (there was a deal if you got both).  Because it’s a medical mattress, I got VAT off.  When I was trying out mattresses, I lay on them like everyone else but I also made sure to do lots of wiggling as that’s how I sleep. For me, memory foam was awful – I couldn’t turn over and it was a nightmare to get me off them as I sort of got sucked in…!  Of all the memory foam ones, the ones which were half sprung, half memory foam were the best.  But the mammoth was the one which was best for me.  If you’re mattress shopping and have a bed raiser or profiling bed, make sure to ask for advice.  Some of the mattresses we looked at would not have worked well if they’d had to bend.

Electric hot water bottle.  All of the hot water bottle benefits without having to use scolding hot water.  Mine are (I have two!) from noozie and take about ten mins to heat up and stay warm for a few hours after, longer if they’re in bed with you.

Metal straws. I use a lot of straws for meds and my drinks and when I go out.  Metal straws are cheaper and more environmentally friendly than the plastic sort.  Depending on where you buy them, you can get a pouch to pop one in your bag and keep it clean.  Most seem to come with a cleaner.  NB, don’t use metal straws for hot drinks, you could burn yourself.  Plastic straws designed for hot drinks are the way forward there.

Toiletry bottles.  You know the ones I mean?  They come free in washbags and you use them to take shampoo away with you.  Well, if you’re on a lot of liquid meds, they can be an easier and lighter alternative to taking all your glass bottles with you.

Salt sachets. My lovely friend picks these up every time we go for coffee now so I have a good stash!  I use them to add salt to drinks when I’m feeling potsy and have some in my bag, my wheelchair and on my trolley.

Earphone headband. I hate sleeping with earphones in but I have awful neighbours who can be so loud I can’t hear my audiobook at night.  Enter sleepphones.  They are a headband which has flat speakers inside.  You can feel them but they are so much better than earphones.  They come with a cord or a bluetooth connection.  Whilst I was concerned about strangling myself in my sleep, I tried the corded version as they’re cheaper and I’ve been fine!  The cable is a good length and their customer service is great. I had a little issue with mine and they responded and acted on my email within 12 hours, no questions asked, no fuss.

Beanbag laptray. You can get some really cool ones these days including ones you can add your own photos to.  They are great for eating off but also for using in bed.  I have my laptop on one at the moment.  I also use them for doing little craft things on so that I can lift and move the whole project easily without dropping stuff everywhere.  You can get crafters trays as well if that’s specifically what you’re wanting.

I’m very certain there were more things I wanted to include on this list but that is the nature of brain fog… If I remember I might add them to the comments!

Insert your own swallowing pun here

trigger warning for anorexia and eating disorders

So, having developed POTS earlier in the year, I now find myself with severely worsened swallowing issues…

Partly this post is so I don’t have to repeat myself but partly it’s also a grumble.  EDS is the gift that keeps on giving.  And just when you’ve got used to one new symptom, bang, there’s another one.

The health issue

I’ve had trouble swallowing for years but never particularly severely.  Mostly it’d be a feeling of a lump in my throat or difficulty swallowing saliva.  Then a year and a half ago I started having trouble with tablets coming back up.  Not often so it took a few months till I went to the dr.  She tried me on PPIs thinking it was silent reflux.  They made it a lot lot worse.  I went from bringing up tablets once a week to once a day. And it didn’t matter what shape or type the tablet was.

I was then referred to ENT.  By the time I saw them I’d managed to regurgitate a lot of juice in the middle of the night, a scary time.  ENT then stuck a camera up my nose and declared there was some redness, probably from silent reflux.  They gave me a really awful printed advise sheet which was full of common sense and nothing I wasn’t already doing…

Then came an appointment with a lovely speech and language person who declared my swallow is slow to get started and a bit weak.  She couldn’t help me with regurgitation issues because the speech and language team only deal with things going down.  She looked into what to do next with me.

Somewhere along the way I also had a barium swallow test which came back fine.

Then, two months ago, I woke up one morning and everything fell apart.  Suddenly I couldn’t swallow most foods without regurgitation, my tablets became a battle and even some drinks flew out the window.  What I have been left with is a strange menu of small portions of dairy free cauliflower cheese (cauliflower cut up super small), gnocchi and grated cheese (but only 8 pieces of gnocchi…) and ice cream.  Up until recently I could do white chocolate buttons (lower melting point than others), only 4, but that seems to be too much now.  I could also do apple juice if it was watered down by half.  Now I’m on a third apple juice to two thirds water and struggling.  I can do lucazade if it’s watered down with lemonade.  And I can do wine, which is probably not a great idea on the amount I’m eating but it’s also probably the main reason I’ve not lost more weight than I have…

I have gone from eating vaguely normally to an amount my anorexia likes and I have gone from drinking 6+ litres of fluid to less than 2 and my salt intake, which I need for controlling the POTS has inevitably dropped drastically…

Thankfully I had a gastro appointment six weeks into the troubles and the dr has been really helpful, or at least he listened well and took note of what I was saying.  Unfortunately there aren’t many options.  I’ve just tried one medication which hasn’t helped, may have made things worse and came with weird side effects.  I’m waiting to hear about a second med he wanted to try but it is a long shot.  And he didn’t want to talk about what happens after that…  Based on the options he ruled out, I can’t see anything other than feeding tubes ahead… Which is a hard thing to think about.

The social issue

A lot of socialising revolves around food but also, right now, i don’t have the energy or the mood to be people-ing much… which i also know is going to make my mood worse…

None of the foods I can eat are any good for eating outside the house because they either aren’t available or need cooking.  This means on the full day course I did recently and the day trip I took, I’ve had some nibbles of cheese, four buttons and glucose tablets to get me through.

There is also the aspect of having to repeat everything to people when I see them and having helpful suggestions made.  Which brings me onto my care.

The care issue

I know that my carers are doing what they’re doing primarily out of concern.  But they keep suggesting foods I should try, asking if they can tempt me into breakfast and telling me about the meals they’re going out for.  Some of this is because it’s hard to know how to help, in fact they can’t help, but some of it is thoughtlessness.

I have placed a huge sign in my kitchen asking people not to talk to me about food or my swallow unless it’s necessary or I bring it up – it seems to be being ignored…  Yes, I do want to grumble to my care team now and then as it’s a horrible situation and I’m annoyed.  But I don’t want to be asked if I’ve thought about soup/custard/blended food, especially when I’ve already explained that I can’t.  And I definitely don’t want to hear the details of your Christmas dinner, because mine is likely to suck.  Literally.

The mental health issue

And of course, within this all, we have the anorexia.  Which was in a good place mostly.  And I think anyone’s mental health would suffer in this situation.  Firstly, I’m not getting enough food and that’s bad for your mind, I’m not getting enough sleep either and I am so bored of the few foods I can eat.  Plus I’m really craving salty foods and cravings are tough to deal with.  And my only real experience of beating down cravings is anorexia…  When I am not experiencing disordered eating, I don’t limit what I eat or when I eat really…  Which actually reminds me that I’m not fully recovered from the anorexia because there are still lots of foods I won’t eat or aren’t comfortable with and I do limit quantity.

So that’s all fun, right?  I’m going to balance this out with a blog post about a new pretty oracle deck in a few minutes!