Feeding tube hacks!

I have a PEG feeding tube and it has given me my life back, but it isn’t problem free. I’ve written about tips before but of course I’m always learning new things so I wanted to do another post.

Storage

You can end up with a lot of equipment – bags of feed and water, syringes, tubing – and you may not want to pile boxes up in the corner of your bedroom or lounge…

I have a set of beautiful wooden drawers that store my smaller bits and pieces such as the syringes and spare parts. In a kitchen cupboard we store tubing and a week or so of feed and water bags, the rest of which we keep on a bookcase and in the hall cupboard. I like to have nice storage as it makes my flat feel less medical but talking of which…

Medication

We have two peg baskets, one for morning medication and one for evening medication, the points in the day when I have most medication.

I discussed how I use a pestle and mortar, tea strainer and medicine pots in my previous post so I won’t expain that again. One addition is a small tea tray that we use to carry the prepared medication from the kitchen to wherever I am in the flat. An alteration we have made is that when we leave the house, we no longer use the soup cups to take flush water as they started to leak a lot. Now we use small kids drink bottle, if you’re looking to find something, think about having a wide neck so that you can get to the water more easily.

Bits and bobs

Since my last post, my PEG has been changed and has a little more discharge than it used to so I have started using tubie pads from etsy. I also forgot to mention the value of pliers! Every so often the giving tubes get stuck to the PEG and pliers will come to your rescue. Make sure you take them with you when you go away as that will certainly be the time it gets stuck.

Having had some leaks overnight, I’m grateful that I have an easy to wash rug beside my bed.

If you are prone to hospital trips then a go bag should include feed and ephemera, don’t assume the hospital will have your feed in stock or be able to get it easily. Also, take medication with you.

Bags and more

I have seen some tubies using rucksacks designed for hydration as they often have an internal loop to attach the feed bag to and a channel for the tubing to get from inside to outside. I’m wondering if the headphone port on many bags could also be used.

I have also come across, but not tried, the free arm which looks like it could be used to attach a feed set up to a wheelchair, table or other structure.

I have recently had to extend the amount of time I am hooked up to the pump and in lockdown that has been fine but once I re-enter the world, we are going to need a way of taking the pump and water out too.

As I already have a specific wheelchair bag that fits all my stuff in, I didn’t want to go down the rucksack route. I do also have a bag designed for the pump and feed but it is boring and black, and the way its designed means the tube kinks a lot and causes errors.

So, after a bit of thought and experimenting, I discovered that the pump attaches onto a tripod. Specifically, a Joby Gorillapod.

Nutricia florcare Infinity pump attached to a Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod and the water bottle hooked onto the wheelchair headrest

The longer term plan is to get a caribiner hook to attach the water/feed bag, the photo was just us trialling the idea.

Please share your own tips and tricks below!

Illness as an identity

First, I know this will be a controversial topic. I found a thread on Twitter with many chronically ill people ripping the idea to shreds. So I want to be clear, this will not apply to many people who are chronically ill. However, I’ve known people where this has been the case and who often don’t see for themselves that this has happened.

So, what kick started the twitter thread, and this post, was a psychologist (I think) saying that for some chronically ill patients, their illness has become their identity.  Not just something they identify with, but their entire identity.  The person was saying that for these patients, engaging with the healthcare system to the degree that they do is not always helpful and can actually be harmful, physically or psychologically.

She went on to talk about using the twelve step program traditionally used for addiction to help this subset of patients and I don’t want to talk about that.  I don’t know enough about the program and what I do know, doesn’t always sit well with me.  But the issue that many chronically ill people were having wasn’t with the 12 step program, it was with the idea that what she was saying was basically patient blaming.

The initial tweet was followed by a number of versions of “I don’t want to be chronically ill, I don’t choose this” which I think is problematic in the context of addiction as addicts don’t chose addiction. But it’s also problematic because people are saying this doesn’t apply to me and therefore it must not be relevant to any chronically ill person.  An overlooking of the fact that the psychologist was talking about a small number of chronically ill people.  Chronic illness isn’t a unified group, for starters there are many different ways to be chronically ill and different people are at different stages of the psychological work that goes with being chronically ill.

After reading this twitter thread, I went on to do some research about the idea of illness as identity and much of it confirmed what I thought.

There are different ways people react to chronic illness and I’d like to point out that that doesn’t make for better or worse people. We all deal with things differently, based on our life experiences and personalities.

Visualization of the four illness identity constructs.
The dot represents the heart disease and the circle represents identity. Illness Identity

Whilst the above diagram is focused on heart disease, the model works for chronic illness more broadly.  There are four routes which patients tend to go down:

  • Engulfment
  • Rejection
  • Acceptance
  • Enrichment

And the patients that the psychologist was likely talking about were those who become engulfed by their illness.

Engulfment indicates the degree to which patients feel that their disease dominates their identity. These patients completely define themselves in terms of their disease.”
Illness Identity

This seems to me to be the group of people who spend vast amounts of time at the doctors or hospital when its not really necessary. Who call the doctors at the first sign of what is likely a “normal” issue- a sniffle, a cramp, extra fatigue- and who don’t consider that it could be a “normal ” issue or a response to something they’ve done. Or who only ever talk about their illness.

“When the individual becomes absorbed in his or her chronic illness, he or she focuses on the suffering, loss and burden associated with it. His  or her self-identity will then be formed around being a patient as he or she identifies with the sick role.”
Chronic Illness and Self-Identity

I know people who in theory want to do x,y,z but who use their illness as a way to avoid even attempting it. I’m talking here about things which are achievable within that person’s limits but which never get attempted because of the way that illness is consuming them.

I’ve known people who’ve had surgery after surgery for an issue that surgery will not cure. I’m talking here about 20 surgeries on the same joint even though all the literature advises against any surgery. This life then becomes about surgery, being a patient, recovering and repeat. It seems to be reasonably clear that something else is going on here. That the person is using surgery to try and meet some need, whether that’s the hope of a miracle or the attention and care that comes with the cycle. These are valid needs but there are other ways of meeting them.

On the other hand, I know people who vehemently push against their illness, pretending it isn’t there and that has its own issues.

“Another construct pertaining to illness identity is rejection, which refers to the degree to which the disease is rejected as part of the patient’s identity and is seen as a threat or as unacceptable to the self.  Patients with high rejection scores tend to refute their disease, which often results in suboptimal disease self-management and adherence.”
Illness Identity

I think most of us go through stages where we dip in and out of the different categories and that is ok, our health changes, our life changes.  And of course having a chronic illness is likely to affect how you think about yourself, how you see yourself and your identity but everyone is more than their illness.  An ideal end point, especially if there is no known cure for your chronic illness, is acceptance.  This is not about denying the illness but about trying to live your life with your illness.  Acceptance gives you resilience, adaptability and a better quality of life.

Although it is a constant process, one that is never completed,individuals can, through reframing the experiences of the ill body and ultimately surrendering to the illness, form a new positive self-identity… when an individual accepts the sick body instead of constantly comparing it with both its past capabilities and the hopes of its future perfection, the sick body becomes predictable, manageable and even comfortable.”
Chronic Illness and Self-Identity

And on a final note, I have ehlers danlos syndrome, I am not ehlers danlos syndrome. I am Helen. I am a writer.  I am an artist, a friend, a reader and so on.

Links

Things that improve my life

This is part four I think… Of course new products become available, I become aware of different products and my needs change so this is likely to be an ever evolving list.

So, things which improve my life include…

An adaptor which turns your wheelchair into a phone charger.  I have a short, multi ended charger plugged into mine so that I can charge any of my devices, my friends and my carers should the need arise.  It works when the chair is turned off as well as when it’s in use.

Small wheelchair charger.  Most wheelchair chargers are big and clunky and not very portable but you can get some which are more reasonably sized and I have one of these in my wheelchair bag at all times, just in case!

Period pants, which I love so much I wrote a whole blog post about them…

Now I have my wheelchair vehicle – another thing that makes my life easier! – I am going out and about in my electric wheelchair a lot more which is so much better.  However, it is bigger and doesn’t let me get under tables very well which is annoying when I’m at courses and want to write notes or rest the handouts on the table.  So I got a Trabasack wheelchair tray, in purple of course.  Mine is the curve connect and it hangs on the back of my wheelchair but then when I need it, it fits snugly on my lap and has a zip pocket so I can pop my tablet in there.

My tablet is also an essential.  I go for the lightest reasonably priced one and when I needed a new one, this happened to be the Samsung S5e.  I also got the keyboard and a stylus.  I also have a pen holder which is designed for books and basically is a piece of elastic that handily slides round my keyboard cover so my stylus is always to hand.  Unfortunately I cannot seem to find what I mean online…

As winter is approaching, I’m using my wheelchair cosy and waterproof a lot more… For added warmth I also tend to add blankets under the cosy and if it’s really cold, then an electric hot water bottle.  If it’s really really cold, then I’ll also pop a couple of hotrox in my shoes… Heat packs are also handy for warmth and soothing angry body parts.

If you aren’t as obsessed with being warm as me, then you may want to have some cool packs in your house… There are ones which turn into ice packs on opening which are useful for out and about and we also wrap small freezer blocks in a tea towel.

Actually, that reminds me, in the summer wheelchairs can get very sweaty… They tend to be black and tend to be made from plastic-y fabric.  This meant that on one of the first really hot days this year, I ended up with my back drenched in sweat… And kept burning myself on my wheelchair.  We got round this by using a thin cotton blanket which we draped over as much of the chair as we could.

Talking of out and about… I have a wheelchair bag which aren’t known for being exciting so I have covered mine in patches and badges.  In it are the usual things like keys and a phone but also sachets of calpol, my medication paraphernalia, heat packs, ice packs, reusable straws in a totally strawsome straw pouch and a spoon with a moulded handle that I can use more easily.  There’s also a 4Head stick which I use for headaches but also find it can help relieve muscle tension when my joints get angry.  And also a few sachets of salt in case I feel POTsy when I’m out and about.

Back in my flat, I have a wonderful mattress (mine is a mammoth one but mattresses are very personal) and a very specific to me bed arrangement.  I have two maternity pillows which help to position my upper body, a leg raiser to support the lower half and a duvet raiser tent like thing which stops the duvet from bending my feet.  The latter is good but I found that it was causing a draft as the duvet wasn’t long enough to drape over the end so I have covered it with a blanket, secured by pegs.  I also found that it would sometimes fall off the end of the bed so I got a kids bed rail and popped it at the foot end of the mattress.  Problem solved.

And just a few odds and ends that I wanted to mention:

  • baby toothbrush wipes so I can sort of clean my own teeth – I don’t like things in my mouth so it’s very hard for my carers to clean them well…
  • a cup holder which is designed for prams and pushchairs but which also attaches to my wheelchair and is perfect for popping my phone or keys in
  • peg boxes are great for carrying around the bits and pieces I need with me in my flat – phone, door opener, postit notes, 4head stick, nail file etc.  It means that I don’t have to remember to move them from room to room and I don’t need my carers to get anything I’ve forgotten.
  • a massager… I got this from Naidex and I love it.  Mine is a Truviv one and I’ve found it really helps when my shoulders are tight.  I do have to be careful because of my joints so I always use it on the slower speed and not for too long at a time.  Just something to think about if you have EDS.
  • a back rest for my manual wheelchair.  This actually came free with my massager and is probably not designed for wheelchair specific use but it fits perfectly and makes the chair a lot more comfortable.

Finally, a sense of humour makes all the difference.

The pros and cons of being my carer

Recently I was thinking about the role of my carers and the pros and cons of their jobs and having spoken with them, the pros and cons weren’t necessarily the obvious ones.

There are some very obvious pros, for example going to the theatre with me, going on days out, going on holiday…  All of these things are something I need assistance with and therefore a carer gets paid to go with me.  When we aren’t out and about, we’re normally at home watching netflix or youtube and I choose what to watch based on who’s on shift with me.  I’m great friends with my care team and that has to be a pro… at least I hope so!

When it comes to the cons, you might expect somebody to say emptying the commode, showering me or washing my period pants.  You might think it’s hard having someone ask you to do something every few minutes or having to anticipate someone’s needs.  To be a third wheel at times or having to go to things and places that you don’t want to.

But the reality is, having spoken to my carers, the things that they see as cons are dealing with spiders and coping with my nightmare neighbours.  Starting work at 8.30 was also mentioned with the caveat that this would also be the case for most jobs so isn’t care specific!  This morning I did not want to wake up, but I have to get up by a certain point to have my medication, and my carer hated having to interrupt my dreams.  In a similar vein, it’s hard for them to see me anguish over asking for help on bad days for things I can cope with on better days, and watching me suffer with pain when there’s nothing else that can be done. 

Essentially, the harder bits of my care are because my team are empathetic, kind and caring people who find it hard to see another person suffering.  

Of course, this isn’t the reality for many carers who are overworked, underpaid and expected to see numerous clients in one day.  I am lucky in that I have a small care team who work with one or two clients and so we are able to build that relationship which is important.

The last two years

Two years ago, September 2017, I stopped being able to swallow properly. My diet suddenly dropped to include less than a handful of options. This was to be the start of a significant change in my health and life.

In November I was admitted to hospital for the first time in my life. For three hellish weeks. I repeatedly explained to numerous people what was going on with my swallow. Repeatedly I was disbelieved. Tests came back saying I was fine and nurses reacted by telling me there was nothing wrong so I could swallow. I had my first NG tube and when I got distressed and questioned the level of discomfort I was experiencing with it the nurse told me I should have just eaten so I wouldn’t have needed it. It was clear I wasn’t being listened to with open minds. The first 16 or so days I was in hospital I was getting no food and very little (very very little for me) fluids and no medication. So that included no pain relief, no antidepressants and no antihistamines despite horrific allergies. No one seemed to understand why I thought this was a problem. I would later be sent home with ‘magical medication’ which would surely fix me and told it’d be reviewed in four weeks.

This meant four weeks with very little food because the tablets would take time to work, if they worked at all. No one seemed to understand, or at least acknowledge, why I was distressed by this. Everyone was just focused on how great it was I’d be home for christmas. There was no back up plan.

Six weeks after that, in what my nice gastro described as ‘a bit of a pickle’, I was finally re-admitted to hospital. By this point I was once again starving, dehydrated and was violently sick every time I moved. I was so ill that they couldn’t give me the NG tube I had begged for through tears just two weeks earlier. Most drs still didn’t believe me. One refused to tell me what the plan was once an NG tube was in because I wasn’t co-operating (I was violently sick when they tried to put the tube in but she read that as uncooperative). She had earlier decided that the way forward was refering me to the eating disorders team which I know is a long wait and I also repeatedly told her it wasn’t a relapse of my anorexia. She just kept asking how would I know? She went on to get me assessed by the mental health team and thankfully they realised I was in a drastic situation and was reacting much as most people would, that my mental health was suffering but wasn’t causing my swallowing issues.

I have since found out that in the run up to that second hospital admission j was hallucinating . I knew things were bad but until recently I didn’t know how bad…

Eventually the good dr won out and I was able to get the PEG tube that we both knew I really needed. The first try failed because my stomach was in the wrong place … so it took a second attempt to get the tube in me. During this hospital stay I had multiple days of being nil by mouth or tube, more days like that than days being able to eat or drink I think, because various tests were being run. They were concerned about my blood sugar levels which was ridiculous because if you havent eaten in months, they were going to be squiffy…

Whilst still in hospital I had issues with my care company and it became clear I needed to change. This has been reiterated by the much improved care I’ve had with the new team. But getting used to new staff, getting people trained up etc is all tiring, hard work. And I was recovering from starvation and all my EDS symptoms got worse whilst I wasn’t able to eat. I also gained new symptoms.

One of these new symptoms was wobbly lenses in my eyes. This limits how much I can read at once, how well I cope with movement and can lead to me feeling very seasick when all I’ve done is scroll through instagram. Yet another thing to adapt to and change to cope with. I now have pink tinted glasses which help a lot but I still have symptoms because of my eyes and I can’t see distance as well as I used to, something that means it’s incredibly difficult to use binoculars and which affects my ability to see through my camera viewfinder.

I also lost physical strength as well as awareness of my body. When I was in hospital the second time, if my eyes were closed, i didn’t know if i was laying down or sitting up. And that is something that hasn’t fully recovered although is vastly better than it was.

Today, two years on, I am incredibly grateful for my feeding tube. I no longer have to worry about my calorie intake, or how I manage to maintain my high fluid needs or how im going to swallow my medication. I have figured out the random things I can and can’t eat or drink and I’m happy with where things are. I have the energy to get out of bed, to leave the house and even to go on holiday. Everything has changed significantly. And what I’m most grateful for is that I got to share my two year ‘anniversary’ with my best friend who had shared a room with me almost exactly two years ago. A couple of weeks after my swallow broke, she put up with my odd eating and awful exhaustion. Months later, despite being 200 miles away, she spoke with my doctor and fought with them to get me the care I needed, and I love her.

What my wheelchair vehicle means to me

I do have more posts about animals and death in the planning stages but my week away took a lot more out of me than expected so they are at the coming soon point…!

My week away brings me to the subject of this blog post, what my wheelchair vehicle (WAV) means to me, because without it the holiday would have been very different.

car

I’ve had my WAV for nearly two months now.  It’s a Peugeot Rifter and both my electric and manual wheelchair fit in it which is a huge difference to only being able to take a manual chair in the boot of a car. The latter means that I have to be pushed by a carer. So what has my wonderful WAV let me do?

I went to Beverley to see the Wildlife Photographer of the Year exhibition.  Being in my electric chair meant I could move through at my pace without having to tell someone and I could see the pictures better as my electric chair is higher up.

We drove over to Hebden Bridge to see a friend of mine.  We went to Osmotherley to walk around Cod Beck Reservoir.  It was much more comfortable and less painful being in my electric wheelchair and it meant that my carer could walk along beside me which makes it much easier to talk to her!

DSC_0140

We went to Scarborough and because I was able to take my electric wheelchair, I was able to spend time someone without my carer being the third wheel.  Whilst I love my carers and they are great, I don’t always want them literally looking over my shoulder as they push me.

Of course the biggest thing that my WAV has made possible was my holiday.  We were able to drive down south, meet my lovely friend and do little day trips.  Again, being in my electric wheelchair makes a huge difference to my experience.  I am much more comfortable, less battered and bruised, am able to talk to my carer and can move around on my own. I no longer have to try and guide a carer into the position for me to take a photo – left a bit, right a bit, no back a bit… And my electric wheelchair is a little higher so when we go places like the zoo, I can see over the railings more easily.

me

Without my electric wheelchair, we couldn’t have gone to most of the places we visited because for some reason all the paths were gravel which is incredibly hard to push a manual wheelchair through.  As it was, I did get stuck a couple of times with my wheels skidding.  In my manual chair, not only is it a nightmare for the carer doing the pushing, it’s painful for me and it undermines a lot of the enjoyment of the trip.

I am loving the freedom that my WAV is giving me and the ability to use my electric wheelchair wherever we go.  I am very aware that the benefits system has many faults but I am so grateful that I’ve been able to use mine with the motability scheme to get my WAV.

Bring on more trips and days out!

Do all disabled people think the same?

Clearly the answer is no.  But this is an interesting video which asks some interesting questions and I wanted to share my responses.  I realise this comes on the back of another blog post where I respond to questions but I’m not anticipating that this will become a trend.

Am I offended by the word disabled?

I know this is something that bothers some people, and different places have different preferred language.  For example in the UK, we tend to speak of disabled people whereas in the US, people with disabilities seems to be the preferred option.

Anyway, back to the question.  I have no issue with the word disabled.  It describes my situation and is vastly better than some of the alternatives such as differently abled or special.  I do think it’s important to remember that disability, or being disabled, is more than just wheelchairs though.  It covers physical, mental and learning disabilities and I do think that the symbol of a person in a wheelchair is too narrow.

Does this country provide enough resources for the disabled community?

It doesn’t matter where in the world you are, the answer to this is no.  Of course some countries are doing a better job than others but disability is generally underfunded, under-acknowledged and misunderstood.  There are still so many taboos and stereotypes out there and these damage opportunities for disabled people.

Are most people ignorant about my disability?

For my particular disability, things are getting better.  There is more information about there about my condition.  In terms of using a wheelchair, there is a lot of ignorance.  People still think if you use a wheelchair, you can’t stand or walk at all.  This is the case for some people but many of us can get out of our chairs.  Related to that is the idea that disability looks a certain way and anyone who doesn’t fit that image must therefore be faking.

Do I appreciate it when people offer me help?

I was in town once, in my wheelchair outside a shop waiting for my friend.  I was trying to put my coat on.  Someone came up behind me, I hadn’t heard them, the first I knew was when they grabbed my coat and started trying to help me.  I do understand it was meant well, but it could easily have led to my shoulder dislocating.  Please, do ask if you think I need help, but don’t just thrust it upon me.

Also, if you do want to help and have asked, listen to me as I probably know how best you can help me.

Is dating difficult?

Yes.  Dating requires being vulnerable and that can involve another layer of vulnerability when you have a disability.  There are also all the should I shouldn’t I’s.  You want people to see past the disability but also, especially if you’re short on energy, you want to meet up with people who aren’t going to turn out to be prejudiced.  And there are a lot of people out there who don’t see disabled people as sexual beings, people who wouldn’t consider dating a disabled person and people who assume that dating a disabled person means you become their carer.

Have I felt like a burden?

Yes.  In general, my friends don’t make me feel like a burden but strangers do all the time.  Whether it’s when I’m asking to squeeze past in my wheelchair or need a hand moving chairs in a cafe, there does seem to be two reactions.  The people who think nothing of being helpful and those other people who really make you know that they have had to go out of their way for me.

Would I change my disability?

This is an impossible question.  I would love to not be in pain 24/7 but I also wouldn’t be me if I didn’t have my disability.  Without it, I have no idea what my life would look like.  I’d be on such a different track and whilst that’s intriguing, there are things in my life that I really value that wouldn’t be with me without my disability.  I wouldn’t have had as much time to write and do art and learn about tarot and astrology.  I certainly wouldn’t know as much as I do about nature.

Am I living a fulfilled life?

When read with the above question, I think the answer has to be yes.  It’s a different life but it’s one that I have put time and effort into creating.  And even without my physical disability, I’d still have had to overcome my mental health issues.  I know what I need to do in order to feel fulfilled.  I learn, I read, I think, I create, I go out and I chill out.  Retiring meant I had to figure this out, it was that or living in a groundhog day world where I did the same nothingness every day.

EDS and drinking, take two

Four or so years ago I wrote a blog post about EDS and drinking and felt it was time for an update!

What are the issues with EDS and drinking…

  • you may not be able to swallow or have a limited swallow.  In my case I can drink some things and not others.  Generally when people can’t swallow liquids very well they are advised to try thicker drinks. In my case this concept is reversed, I can’t drink thick drinks but can do water and squash and thin liquids.  I also can’t drink anything with sugar in.  No idea why this is the case but wanted to mention in case it helps someone else identify a pattern in their own swallowing.
  • you may not be able to lift a drinking vessel
  • you may not be able to open a bottle with your hands or a sports cap with your teeth
  • you may have a tendency to spill or drop drinks
  • you may need to drink more than the average person to manage POTS

What are the solutions?

Contigo Autoseal are still my go to for hot drinks and I still haven’t had a problem with the flask mentioned in my first post about this subject!  They have a couple of designs so it’s worth having a think about what will be best for you.  I find the ones without handles easier but the ones with handles do have locks for added security.  The button you press to open the mouth bit is fairly easy to press but not so easy it’ll get pressed in your bag.  You can also get a replacement lid if you ever need to so you won’t need to throw the whole thing away.

Note of caution: your drink will stay hot for hours. If you want to be able to drink it soon, add some cold water!

Straw wise, you’ve now got a range of options which is amazing!  There is lots of advice out there now in response to the straw bans but I find this from @rollwthepunches particularly helpful:

straw

Hopefully it will help you think through your options.  Personally I use metal straws for cold drinks and I have a little pouch that I take out with one in so my bag doesn’t get wet after use.  I also take out straws which are made of plastic designed for hot drinks, a bit like these from Serephina’s Kitchen.  Note, don’t use the metal ones for hot drinks!!!

I’ve tried glass straws and liked them for drinking wine – it felt classier than using plastic or metal – but my carers ended up breaking them all.  All of these can be hard to clean if you have hand issues so do consider that as well.  Some can go in the dishwasher and this might be something to think about if you don’t have someone who can help you clean them.

When it comes to cold drinks, I get through ridiculous amounts of squash and diet fizzy drinks in a day.  I’m talking 5 to 6 litres a day.  Obviously this means I don’t leave the house without a bottle and that bottle is one from Hydrate for Health.  It pops in the side pocket of my wheelchair bag and the long straw means it reaches round the chair and clips onto my coat or skirt or whatever.  Without it, I’d be asking my carers to open a drink every two seconds…  I also use it overnight.  It hooks onto the trolley by my bed and means I can easily drink when in bed.  I can even drink laying down, all I have to do is move my arm!  You can also buy replacement bits which is great – I have two bottles and have had them for years now but from time to time I need a new clip or straw and I like that I can get them separately.

At the other end of the size spectrum I have a Contingo Autoseal water bottle which is a mere 300ml and has been to Cambodia and back with me.  When I was on the plane, I got it refilled with water and hence didn’t have to bother with plastic cups.  I have absolutely no issues with it and, like my flask, have had it for a number of years now!

During the day I like to drink fizzy drinks and the hydrate for health doesn’t really work for that so I use those plastic cups with lids and straws.  You can find them in bargain home stores and have grown in popularity over the last few years so are fairly easy to find.  If you don’t know what I’m talking about, look at this one from amazon but note that you can normally get them for less than £3.

Safe Sip drink covers can another great product and can be used on wine glasses! They are easy to use and small enough to carry with you if you’re going out.  Pop them in a little pouch with your straw!

Being washed by carers

One of the most intimate parts of my care is being washed by another person.  Once my hand splints come off, I struggle to use my hands and can’t open bottles or hold a sponge without causing further hand pain.  It is because of this that my carers wash me, my entire body, yes, even there.  My entire body.

What does this mean for a 32 year old?  Well, today it’s normal.  I started having carers wash me when I was 28 and the flat I lived in wasn’t accessible.  We were having to sponge wash me at the sink.  I would sit in my dressing gown and we’d slowly work through my body.  It was cold and tiring and that was my overwhelming feelings about the matter.  They over-rode any concerns about privacy and dignity and nakedness.

But, it was important to me that it wasn’t just anyone who was washing me.  I insisted on regular carers than I could build a relationship with and there were particular carers who I chose to wash me because we had a better rapport.  One of my carers was very nervy and anxious and the idea of having her wash me wasn’t one I was ok with.  Another was incompetent and whilst that’s not great when she’s brushing my hair, it’s something else when she’s taking a sponge to my boobs…

Later I would move into a flat with a shower and whilst it was much better than sponge washes, it did change things slightly.  I was sitting in front of a fully dressed carer whilst I was completely and utterly naked.  And yet, I was ok with this, so long as I could chose the carer.  We got into routines and it was a bit like a strange dance; I start by offering my arm out to be washed, then I turn and my other arm gets washed.  Then my legs, then my back, then my tummy and so on.

Today, having carers shower me is run of the mill, it’s what we do, it’s how I get clean.  Still though, the quality of the shower is down to how good my relationship with my carer is.  I had a carer last year who I didn’t get on with, who didn’t listen and who didn’t treat me with the respect she should have.  I didn’t like having a shower with her.  She got shampoo and shower gel in places that didn’t need it – eyes, ears etc.  She didn’t like to talk whilst showering me.  She stood as far away from me as she could whilst also doing the job.  She tried to do things her own way which means the strange shower dance I have spent years perfecting didn’t work.  It was awkward and clumsy and disconnected and I felt like an object.

Similarly, carers who are prudish or standoffish make for an awkward atmosphere.  They see you naked and whilst I don’t expect to see my carers naked, I do expect to feel like I know something of the carer, outside their job.  That they have a couple of kids or a dog is enough.  That acknowledgement that we are both people.

I am lucky and I am now with a great care agency who focus on compatibility which in turn means showers are easier.  But the idea of being with an agency that sends out different people every day horrifies me.  To be showered by someone who has just met you, who doesn’t know you as a person, who doesn’t know what you can and can’t do and what might be risky or not.  It doesn’t happen in any other relationship.  The very least I would expect is to have met the person who is seeing me naked, in a physically vulnerable situation.  To have a care manager who acknowledges that I am a person with preferences and not an object.  It is not like taking a car to a car wash.  There needs to be dignity and rapport, understanding and empathy.

The vulnerability inherent in being showered by a carer must also be acknowledged:

“One person, strong and able, stands above and over another who is frail and physically vulnerable, forced to rely on their strength and goodwill… Being naked in the face of someone who is not, contains a powerful dynamic of domination and vulnerability, and it is often used in situations of interrogation and torture as a means of subjugating the individual.”
Julia Twigg

If you are washing, or being washed, by another person:

  • make sure the room is warm enough – being showered by another person is a lot colder than showering yourself
  • check the temperature of the water and make sure to either keep checking it or that the person being washed feels comfortable enough to speak up
  • non slip mats for safety
  • a shower seat can make things easier and safer
  • if the person being washed can do bits of it, let them; if they can do lots of it, they may want you to wait outside within shouting distance
  • if you’re being washed, having nice products can make it feel a little nicer
  • showering can be a good time to check for sores and rashes and bruises and such things
  • check what side of the sponge the person wants using – I want rough side for legs and soft side for top half of my body
  • having a shower routine can make things easier, less tiring and quicker
  • once showered, my carers wrap my towelling dressing gown around me and I dry that way
  • but most importantly of all, communicate, and remember that you’re helping a person, you aren’t washing a car.

Motability grants and processes

Firstly, my experience will likely be different to yours so this is my version of the journey.  However, when I got my PIP approved and was looking for information about the process and the grants system, I could find very very very little.  Hence this post.

Firstly, for me, it was a case of going to NAIDEX where I could see a variety of wheelchair adapted vehicles, or WAVS, at once.  Motability also do fairs which work much the same I would think.  Going to NAIDEX meant I could get in a range of WAVs and see what might be the right size for my needs and talk to staff about different options.

An important thing to understand is that there are many companies which offer WAVs but ultimately Motability will be renting from them, in order to rent to you.  Sound complicated?  Well, you’re having your first lesson in all of this… nothing is as simple as it might be…

You can ring the different companies to talk about your needs or to arrange test drives and demonstrations.  My feeling about it all is that it’s ultimately about the right vehicle.  Some companies provides some vehicles and others provide other ones.  Of course their service levels and how they treat you will be important but you will have this vehicle for 5 years.

Another thing to know about Motability is that they offer grants.  This is important as there are generally initial costs involved in WAVs.  The grants process seems designed to put you off… especially if you have issues with phones… Initially you ring Motability to get an application for the grant.  On that phone call you will need:

  • the applicants name, date of birth, address, phone number, email address and national insurance number
  • the length of time the applicants PIP is in place for
  • what benefits the applicant is on, specifically means tested, and what other income do they have
  • what condition does the applicant have
  • who else lives with the applicant
  • who will be driving the vehicle, do they have any points on their license, do they drive manual or do they need to drive automatic for their own medical reasons
  • what equipment do you travel with

Once you’ve provided that information, you’ll be sent an application form either by post or email but email is obviously quicker.  When I contacted them, the turn around time from receiving it back was 5 to 6 weeks.

This form will ask for:

  • everything above
  • more details about how the condition affects the applicant
  • the size of the wheelchair and your height when you’re seated, also your eye level height when seated
  • the size of all equipment you’ll travel with
  • what benefits you’re on
  • what income you have
  • how much you have in your bank accounts
  • your height and weight
  • your main drivers height and weight

When considering which WAV is best for you, think about the following:

  • do you want to be able to drive or who is going to be driving it
  • how many people will you be travelling with
  • do you want to use it for an electric wheelchair or a manual wheelchair
  • what needs to fit in the WAV
  • how important is space, comfort and smoothness of ride to you
  • where in the vehicle will the wheelchair be and how does that affect how the air con reaches you, how the radio reaches you and how you can reach the windows and speak to the driver

Think about a test drive route so that you are comparing like for like when you do the test drives.  We went for one that covered speed bumps, pot holes, lots of stopping and starting and dual carriageways.

Don’t be afraid to ask questions, to try out as many options as you need to.  This vehicle will likely be with you for 5 years, it needs to be the right one.