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 :)

Conscious Crafties

So this week I was fortunate enough to be accepted into Conscious Crafties.

The Chronic Comforts store has been set up, there's not much listed at the moment but its growing day by day. You can have a look here:

https://www.consciouscrafties.com/Crafties/chronic-comforts/

Conscious Crafties Is a lovely, friendly community of people with chronic illness' or people who care for those with Chronic Illness' to sell their crafts. It goes further than an online store. There's a supportive community where crafties can find support, advice and creative genius. It's all the brainchild of karen thomas a lovely lady and a spoonie  herself, here's what she has to say about why she founded Conscious Crafties:

How was the idea born?

Karen Thomas
Conscious Crafties Founder

Hi there, I'm Karen and after becoming sick in 2011 almost overnight, I found my way to various support networks. I noticed we all shared the same sense of loss, we'd lost friends (because not many stick around when you have to let people down at the last minute), some of us had lost jobs (due to being unreliable) and the biggest thing that hurt deep into my soul was the overwhelming loss of purpose, we all felt useless. I desperately wanted to make that better. So in 2011 the idea was born to create a community for everyone to showcase their talents in one place and give people a way of creating their own businesses. It was also a way for me to feel useful again, by using my skills to help others. Conscious Crafties is about empowering us all to be successful, tell our stories and meet new like minded friends who understand our struggles. I'm also hoping it plays a key part in changing the way Disabled and Sick people are viewed by the world. We can still contribute and are incredibly talented!!

 

My Beautiful Friend Sam

Conscious Crafties has been built in honour of Sam, my beautiful friend I met through sickness and our love of crafts. Her strong fight with Gastroparesis and POTS sadly ended in Oct 14. Heartbroken, I knew then, after years of thinking about it, the idea for us all to sell our crafts and skills within a supportive community needed to be launched, so it could help people NOW and give them hope for the future.

Karen has been so patient with me and has supported me to open my Conscious Crafties shop. The whole site has tidbits of advice at every stage and well thought out timesaving features all designed to save you some energy. Ive only been set up 3 days and im already making friends.

Once you list a product the "techy magic" on the site posts it on social media to get your products seen by a wider audience.

I've been amazed at the wide range of skills and talents there are, from artists to wood burners every kind of art and craft is welcomed. You can apply to become a Conscious Craftie here

Or buy something from a talented disabled person or carer here.

As usual any questions or comments just let me know below....

As always thanks for reading,

Laura :)

Social self care

Hi guys,

Todays post in the self care series is social care, if you missed yesterday's post on Emotional self care you can catch it here, if you would like to start at the beginning of the series here's The basics of self care.

So why is social self care important?

I don't know about anybody else but i have moments, sometimes days where i just want to hide in a cave and not come out. I don't want to see anyone, talk to anyone or be near anyone, i just want leaving alone. However there is then a real danger of becoming and feeling isolated, alone, lonely. As humans were sociable creatures, been isolated can make us unhappy, depressed and anxious.

Been chronically ill can make been sociable difficult. Pain can make us quiet and withdrawn, anxiety can leave us afraid of social interaction and fatigue can leave us not having the energy. That's all before we even get to the issue of having to cancel plans at the last minute due to flare ups / relapses  / down days. Luckily there are ways around this.

First of all having a small group of friends or even one friend that understands or at least tries to understand and doesn't get upset when you cancel is priceless. Hold onto that friend like they're a tub of  vegan ben and Jerry's and never let them go!

If you cant make big social events like parties (or they're too much) organise small events at a place where you know you will be comfortable and can manage if your condition worsens while your there. Invite those friends that are like gold and do something easy that can be quickly changed if needs be.

My favourite thing to do is invite one or two friends over to my flat and let them pick a movie or a DVD or netflix and get a takeaway in. minimum spoons used, no cooking or long conversations are needed and if i start to feel unwell as the night goes on i can lay down on my sofa, take meds etc... whatever i need to do. The upside is i get to see my friends and feel sociable, the downside is that they are having to come to me all the time.

If having people over isn't an option or you don't have any of those ben and Jerry's friends another option could be support groups. I go to a local fibromyalgia support group when i can and have met some lovely people who all understand , the comfort of shared experience is not to be underestimated. Been around people that have literally been there, done that and got the awareness t-shirt can be so supportive and encouraging. There are community support groups all over and a quick google search can normally find them. Failing that if there are any charities for your condition(s) they usually have a database of support groups. If there isn't one in your area why don't you start one?

Now if leaving the house isn't an option there's social media. There are lots of ways you can be social online. Twitter has a chat run by the lovely Tania Jayne (@whentaniatalks)  under @spooniespeak at 7pm every friday (GMT). She also has a blog (http://www.whentaniatalks.com/) and you can find lots of people to relate to using the #spoonie, #spoonieproblems, #spooniecult or hashtags for your condition(s). There are even spoonie netflix parties where spoonies arrange to watch the same thing over twitter and then comment on it together @spooniecult runs these and they are normally at 7:30pm (EST).

On facebook there are the invisible illness support groups, spoonie support line (to exchange numbers), spoonie support and then various support groups for different conditions.

I'm not very good on snapchat as i have not had it long so i don't know if there is any support there.

One things important, you don't have to be alone. If you feel like socialising there is someone out there for you to talk to, been able to talk to someone and knowing your not alone helps ease the isolation that can come with been chronically ill. It can also give you some awesome friends to help you through the tough times.

Again thanks for reading, feel free to check back tomorrow for the last in the series, Spiritual self care.

Have I missed anything? Do you know of other support groups, twitter chats or support that i've missed? Let me know in the comments.

Laura:)

The basics of self care.

Spoonie self care

This week I'm going to be covering self care, I'm currently having a flare up of my ME/CFS so I'm writing this post at quite an apt time over several days. Todays post is covering the basics, over the week I'm going to cover each area in more detail with more ideas for adapting to good days and bad days.

I spent two years learning health and social care at college when I was younger. That taught me the basics of how to care, nurture and support someone's health and wellbeing. I then went on to spend 10 years working in the health and social care sector where I put this into practice again and again. I'm now going to apply that to nurturing my own health and well-being and hopefully help you to do the same.

So the acronym we were taught was P.I.E.S but I think an extra "S" is needed. PIES stands for:

Physical

This is nurturing your physical health, for those with a chronic illness this could be as simple as ensuring that you have taken your medication, eaten properly, drank plenty of water and completed  your Physiotherapy for the day. This can also include exercise (if able) and anything else that you may need to do to look after your physical health.

Intellectual

keeping your mind stimulated. Read or listen to audiobooks, learn new things, take classes, complete puzzles, write, anything that keeps your mind busy. Remember that your brain is a muscle and also needs exercising. Spoonie life can be boring, this keeps things interesting.

Emotional

This can be a tough one for a lot of people especially those with disabilities who can have mental and physical issues. Counselling, journaling, crafting, getting out of the house, been around nature, cuddling pets, taking a bubble bath and chatting to a good friend can all help nurture emotional wellbeing. Emotional ill-health is just as serious as physical ill-health and should be treated as such. There are symptoms which are called "psychosomatic" these are physical manifestations of psychological issues like hair loss and rashes when stressed or a twitch when nervous.

Social

Pain and fatigue can make you cranky, anxiety can make you want to build a fort and never leave but its important to maintain contact with the outside world, even if your fort is amazingly comfy and you need a "warning, approach with caution!" sticker on your head. This doesn't have to be going to a massive party and talking to everybody you see! It can include social media chats like #spooniespeak or @spooniecult on twitter, support groups on facebook, having a Netflix and pizza party with your closest friends or simply making time to call your family and friends for a chat once in a while. Of course if you have the energy and confidence to go to a massive party and chat to everyone go for it! Its about what's right and feels comfortable for you.

Spiritual (The added "S")

This doesn't have to be in the traditional sense of the word. This can be anything from prayer to meditation or even spending time appreciating nature or animals. Watching a sunrise or sunset can be a spiritual experience for someone. As hippy as it sounds whatever makes you feel at peace with the world can take care of your spiritual needs.

Self care should nurture each of these, it doesn't have to be all of them everyday, but as long as they are all covered in some way you can take some control and responsibility over your own health and wellbeing. You can do as little or as much as you can. Adapt your self care to how you are feeling and remember you are important make some time for yourself.

As always thanks for reading. Each heading is now linked to each post from the series.

Laura :)