Clubbing in a wheelchair

So on Saturday I attended a friends hen party. This was something I thought I would never be able to do. I decided I would try in some way to attend. After a month of planning, my husband and I had sat down and thought of a plan of how I was going to get to her house, then to town, into clubs and then home again, safely, cheaply and without compromising my health or wellbeing. We decided I would go out in my power chair as this would give me the most mobility and independence whilst out and that i would need a wheelchair taxi.

Next came finding a comfortable and wheelchair friendly outfit, so I had mid waisted trousers on as a skirt or a dress in a wheelchair just doesn't work for me, I had a top that consisted of several layers so I could remove layers as needed to control my temperature, it's cold outside in the UK at the minute and I overheat inside. we decided on a cross over jacket type thing as it crossed over at the waist hiding my stomach and was mildly elasticated at the bottom meaning it stayed in place around my waist instead of riding up my back. I struggle with Raynauds in my hands and feet so keeping my feet warm but stylish was a priority. I settled on my glittery black diamante high tops and thick socks. Basically the outfit below (obviously this is not me) Tops from next and jeans were mid waisted supersoft jeans by F&F at Tescos. They were so comfy even after 7 hours in my chair. My hightops (below) were from matalan.

  

I struggle with keeping my hands above my head or up for any length of time and with manual dexterity in my hands so i used clip in hair extensions and styled them in my lap to make it easier, then all i had to do was clip them in with a bit of help

The end result before i changed into my outfit.

Once i knew i was going out in my chair and what i was wearing it was settling on a plan and a back up plan to get there and to get into various bars and clubs. I did some research, every time I had to go into town i made a note to look at the entrances of bars and clubs to see if i was able to get in. I pre booked a wheelchair taxi to get from my friends house to town and back again. This was handy as the one that arrived fitted the rest of the girls in so I felt included. Once in town I hit a snag straight away, I was so sure one of the bars didn't have a step I didn't bother to look, turns out it had a step just a bit too high for my chair to climb so that one was out of the question. we went onto a pub and the main entrance wasn't accessible, my friend went in to ask if they had a ramp and it turns out they had an accessible side entrance that wasn't signposted.

After this we found a small bar with cheap drinks, good music and level access through the front, the only snag was that the women's toilets were upstairs. The staff at this tiny club were so accommodating they cleared out the men's, cleaned it and stood obstructing the door so I could use the stall. It wasn't ideal but it worked. After this we went to a larger club. This was a chain of restaurant/bars called revolution, they had level access, disabled toilets and a lift up to the disco hall.

All in all I had a great night and found the bar staff and door staff to be really helpful and accommodating. Ill be honest Ipswich is a medium sized town but I don't think they had seen many disabled women wheelchair dancing so that's a first. The point of all this is if there is something you want to do there may be a way of doing it, it might not be straightforward or easy but it may be possible.

The aftermath

So if any other spoonies are reading this you may have noticed i said 7 hours, yes i was out in my chair for 7 hours! The following day i couldn't sit up without everything spinning, low blood pressure, tachycardia and nausea. I tried to move and quickly realised my whole right side from my waist downwards had seized up, i couldn't bend my leg or move it. Sooooo i spent the whole day lying down with a heated blanket over my right side and salty snacks and fluids to calm the POTS down. I'm expecting the fatigue and right sided stiffness to continue all week but it was worth it.

As always thanks for reading, feel free to leave any questions or comments below.

Laura :)

Getting out and about when you drop it like its POTS!

Following on from my other aids and adaptions posts about cooking /cleaning and showering or bathing I've decided to write about mobility aids and extras to make it easier or possible to get out and about.

I have a few issues with mobilising, it all depends on my pain, fatigue, joints and heart. Sometimes they all play nice and I can wobble short distances with my stick. Sometimes they all hate me at once and I can just about make it from my bed to the sofa to my power chair. It took me a long time to find my mobility aids and my Power chair is the first time I've had the chance to do some research and choose something tailored to my needs.

So I thought id share my experiences and knowledge ...

I started on NHS crutches but because of excruciating elbow and wrist pain I really struggled. I ended up with a gel handled walking stick and although it still hurt my wrist I persevered. I swapped between crutches and a walking stick for about 5 years.

Click the picture if you want to see the Amazon listing

This was my main mobility aid until my heart issues arose, its black with a marbled white effect with gel handle and...GLOW IN THE DARK HANDLE AND FERRULE!!! Its the funkiest one I've had and I still use it to stabilise myself whilst I'm getting my power chair out of my car and on my bad days around the flat. It's called glow and go by drive medical. I bought mine from amazon but I have seen them in mobility shops and you may find one on Ebay. The best thing is been able to find it in the dark and in the cinema!

I probably could have continued persevering like this until I developed heart issues. The issue with POTS is that I can stand and be okay and then 5 minutes later stand up and faint without warning. The SVT attacks make me really dizzy and wobbly so I tend to fall right over thin air. When they're both playing up its a gamble to stand up, let alone try and walk! Evidently its risky to go out in public like this, people tend to panic if you just drop to the floor unconscious in front of them! Add to the mix unstable joints, fatigue and chronic pain and you can see the problem.

Hospital Physios told me it wasn't a good idea to stand up so my husband went on a mission to get me a self propelled wheelchair. He went to the red cross and borrowed one at first, this option is available through quite a few red cross branches, they also loan out other mobility aids and things like toilet frames. Our branch of the red cross also sells used wheelchairs and the amazing man (wish I could remember his name) put one aside allowing us to get some money together to buy it. This is a black version of mine, available on amazon. It was quite good, had removable sides and armrests that lifted backwards to get under a desk or chair. The back also folds down and the chair folds up quite small (I was able to fit it in the back om my tiny 1999 Nissan Micra before it went to scrap heaven).

Click chair to go to Amazon listing.

 

It got me out of hospital and enabled me to leave the house, go shopping, socialise and mobilise without fainting but I could only self propel for a few metres, so I needed someone to push me and I struggled lifting it in or out of my car. I tried using a scooter that would come apart and fit into my boot but it wasn't powerful enough to go up hills, across grass or even on uneven road surfaces like car parks so was no good for me. During this time I had my PIP reviewed ( I will write an advice post about applying for PIP in the near future). Luckily my PIP was increased to enhanced mobility allowing me to use Motability to get a power chair.

Unfortunately you cannot have both a vehicle and a power chair on Motability, fortunately I already have an automatic car big enough for a power chair to fit. If you aren't this lucky you can have a Motability vehicle adapted for a wheelchair and fundraise to buy a chair through things like go fund me or find other finance options, you will need to know what kind of chair you are getting before the Motability vehicle is adapted as  information on its weight, height, width and type of bracket will all be needed to have the right hoist etc..

Quickie Hula with Jay comfort seating

My dad is a mechanical/engineering/electrical genius so I knew if I could source a boot hoist he would be able to fit it for me and wire it up. I bought mine after doing a lot of research to check the weight would lift my chair, it would fit in my car and brackets to connect it to my chair could be sourced. I found I needed a 100kg hoist and brig ayd hoists would fit my car. I found a 4-way one from a reputable company on Ebay and bought it.

Brig-Ayd 4-way 100kg hoist in the back of my 4x4

While I'm out and about I keep myself safe with my Buddi it's a gps enabled falls and panic alarm. It automatically detects a fall and It works outdoors too through a mobile phone signal. It's waterproof so can be worn while showering. If you trigger it staff at their 24 /7 centre respond by asking if your ok? What help you need and who would you like them to contact. If they get no response they call an ambulance to your gps coordinates. It also comes in grey for people who don't like purple, (butterflies are my own addition). It is a bit pricey for some coming in at £50 for the set and £5 a week for the service through Carers UK (a lot more direct from Buddi) but I've found it has given my family and me some peace of mind.

I also have extremely useful keyring cards from Hannah ensor at www.stickmancommunications.co.uk. she covers a wide range of issues including epilepsy, diabetes, hypermobility/EDS, POTS, Ashma, chronic fatigue/ ME etc... and also makes useful bits and bobs like posters, pens, zip pulls and lanyards. These have been incredibly useful during POTS attacks and to hand to paramedics. They're also good to show people who don't understand your conditions or to raise awareness and are quite light-hearted and funny.

Finally onto blue badges. These allow you to park in disabled spaces, closer to facilities and wider to allow you to open your door fully and bring a wheelchair or other mobility aid alongside.

 

You are automatically entitled to a blue badge in the UK if the person who they are used for is over 2 years old and either receives high rate mobility on DLA or receives PIP for been unable to walk less than 50 metres (score of 8). If this doesn't apply to you, you can still apply to your local council and complete their assessment. They usually cost around £10.

 

Whatever you use its important that your comfortable and safe using it and it meets your needs. Its ok to use different mobility aids depending on how you are that day or even more than one aid at a time, you know how you feel and how much help you need. Never worry about using a mobility aid due to your age. People may look but it's human nature to be curious and some people were never taught its rude to stare, just smile at them, if they're really rude try a little wave too and just make the most of your freedom and do your thing.

Have you come across anything that's helped your mobility or made it easier to get out and about? Do you have any questions? let me know in the comments below...

Thanks for reading I know it was a long one and I hoped it helped.

Laura :)

Disclaimer - if you click my links to amazon listings I get a percentage of any purchase made. However I will always say if I know of other places that may sell the same items or are cheaper.