13 March 2019

Cinema Trip (28th February)


On the 28th (February) me and my boyfriend Sam went to the new cinema in my local area. I don't get out of the house for 'fun' things very often and it'd been nearly 2 years since I last went to a cinema so this was really exciting for me (things most people take for granted you really learn to appreciate when you're chronically ill). We went to see The Lego Movie 2 as we'd both really enjoyed watching the first one when it came out on DVD and went for a Costa afterwards.

We booked our tickets in advance to save the hassle of finding a seat on the day (plus you get a discount when you book online which is always a bonus). When we arrived at the service counter a lady printed out our tickets after checking our booking details and asked us if we'd like anything else. We decided to get some nachos to share and a drink each. After serving our nachos she asked us if we'd like any help. Grateful for the offer we happily accepted. We placed the nachos on my lap whilst she filled up our drinks, then Sam pushed me through to the cinema screen and she carried our drinks.

Once inside the cinema we quickly realised that the seats we'd booked weren't wheelchair accessible. As the cinema was completely empty the lady offered to change our seats for us so I could still sit in one of the recliner seats whilst being next to my wheelchair (the new cinema is an Odeon Luxe so all of the seats are comfy recliners). Tickets changed, Sam helped me into my recliner and we got settled in ready for the movie.

The recliners were super comfortable and supported my neck so I was able to watch the movie with minimal discomfort (they were honestly the most comfortable seats I've ever sat in, almost as comfortable as my own bed once reclined!). The staff at the cinema were very friendly and helpful, they made me feel welcome  (not like I was an inconvenience like I've been treated at other places). Their assistance was very much appreciated and is something I haven't been offered before at other places I've visited.

After the movie we went to Costa for hot chocolate and a cake. I had a raspberry and white chocolate muffin (I'd never tried it before but really liked it, I felt so full afterwards though!) and Sam had a slice of chocolate cake. When we got back home I got straight into bed and soon fell asleep, sleeping for most of the night up until midday Friday. 

It was a tiring day and I definitely 'paid for it' (especially the food) but it was worth it as I had a wonderful time, made some happy memories and I'd love to do it again some time. I can easily say that this was one of the most (if not the most) enjoyable cinema experiences I've ever had; the combination of a fun movie, super comfy seats and wonderful staff made it a really enjoyable day. I'd definitely go back again!

Image from Google showing Odeon Luxe reclining seats (as mentioned in my post).

04 March 2019

My 'Good Deeds' For February

At the start of January I shared a post about my New Year's Resolution to try and spread more happiness by completing at least one 'good deed' per month (if you haven't seen it already you check that out here). Towards the end of the post I mentioned that at the end of each month I'd share all of the good deeds I've completed along with any relevant pictures I've taken, so here's the summary of February's good deeds.

In January I managed to complete 3 good deeds, a good start to the year (to read more about those click here). This month (February) I only managed to complete 2 good deeds but taking into consideration that I've been really struggling with my mental and physical health the past few weeks I'm still pretty pleased.

My good deeds were:
• I donated to Alex's Facebook fundraiser. Alex has been in hospital for several months now and has been having a really tough time. This fundraiser was to raise money for living expenses, bills and general life expenses.
(If you'd like to donate here's the link).

• I donated books to spoonie book boxes. Spoonie book boxes is a wonderful project that sends free care packages containing books to anyone living with a chronic illness(es) or disability within the UK. The project relies on donations (of both money and books) to run. I sorted through my books and those that I didn't want anymore I donated. I donated 16 books.
(If you'd like to find out more about spoonie book boxes you can find the website here and Facebook page here).


01 March 2019

International Wheelchair Day


Did you know that the 1st of March is international wheelchair day? International wheelchair day is an annual day of events and activities which take place around the world during which wheelchair users celebrate the positive impact a wheelchair has on their lives. Since it was first launched in 2008, celebrations have taken place in various countries all over the world including Australia, Bangladesh, Nepal, Pakistan, Senegal, South Africa, UK and USA.

What are the aims of international wheelchair day?
International wheelchair day has three main aims:
• To enable wheelchair users to celebrate the positive impact a wheelchair has in their lives.
• To celebrate the great work of the millions of people who provide wheelchairs, who provide support and care for wheelchair users and who make the world a better and more accessible place for people with mobility issues.
• To acknowledge and react constructively to the fact there are many tens of millions of people in the world who need a wheelchair but are unable to acquire one.

Why is international wheelchair day important?
International wheelchair day is important because it allows wheelchair users to share their individual stories of how using a wheelchair has improved their quality of life. By sharing these stories and celebrating the positive impact a wheelchair can have we can start to lessen the stigma and stereotypes associated with wheelchairs and those who use them.

It is also an important day to think about those who need a wheelchair but are unable to acquire one and those who's wheelchair's aren't suitable for their specific needs. According to the WHO (World Health Organisation) there could be as many as 100 million people in the world who need a wheelchair but as few as 5 to 15% of them have access to a suitable chair. International wheelchair day provides the perfect opportunity to discuss this major issue and find solutions.

There are many reasons why a person may use a wheelchair and the reason(s) will vary from person to person. Some people have variable mobility so may use a wheelchair part-time whilst others use a wheelchair all the time/full-time. I personally use a wheelchair full-time for various reasons. My EDS causes a wide range of symptoms, several of which affect my mobility. Pain, fatigue, dizziness, low blood pressure, poor proprioception and other other issues affecting my legs, knees and feet have made walking difficult for years (I started to use crutches when I was 14 but these became too tiring and put too much strain on my shoulders, elbows and wrists- the effects of which I still suffer today).

I first started to use a wheelchair when I was 16 to help me get around college. Just getting to college, sitting through lessons and trying to complete my work was taking up all of my energy (due to fatigue caused by my EDS). I had nothing left for walking so me and my parents decided to invest in an electric wheelchair (I wasn't strong enough to self propel a manual chair). As electric wheelchairs are so expensive and we couldn't afford to buy one outright we brought one secondhand on a payment plan from my local mobility shop. For journeys out of the house a friend kindly lent me her spare manual wheelchair which my parents pushed me in.

About a year later when I was 17 (after I'd had to leave college due to declining health) we decided to bring my electric wheelchair inside the house for full-time use as I was really struggling to get around on my crutches. Around this time we also realised that my manual wheelchair (for journey's out of the house) wasn't suitable for my needs so I was referred to wheelchair services to be assessed and fitted with a chair that better suited my needs. I was given a Karma manual chair with leg raisers and tilt (which I still use today).

For the past few years I've used an electric wheelchair to get around the house and for short journeys out of the house (for example going to the doctors). For other journeys out I have the manual chair wheelchair services provided that someone pushes me in. I'm very lucky that my manual wheelchair is suitable for my needs but sadly my electric wheelchair is not. I'm hoping to save up for one with leg raisers and tilt in the near future.

Using a wheelchair has completely transformed my life. Before I had my wheelchair leaving the house was very painful, tiring, made my dizziness worse and affected several of my other symptoms too. Now when I leave the house I don't have to worry about those things as much, I can enjoy myself and I can go out more often. When my mobility inside the house also started to become affected I was especially grateful for my wheelchair because without it I would be completely bedbound. Since my wheelchair has been in the house I've also fallen and tripped less often.

At first I found it hard to accept that I needed a wheelchair (I think mostly due to the stigma and stereotypes surrounding wheelchairs) however once I realized just how much using a wheelchair could enhance my quality of life I found the acceptance process much easier. It no longer felt like "giving up" or a "last resort" I was giving myself the best quality of life possible and enabling myself to live life to the full. And that's what wheelchair awareness day is all about; getting rid of the stigma and stereotypes surrounding wheelchair use whilst sharing your own personal story.


28 February 2019

Rare Disease Day



Today (28th February) is rare disease day.  Rare disease day is a worldwide event taking place on the last day of February each year (it was first celebrated in 2009). The main objectives of rare disease day are to raise awareness for rare diseases and their impact on patients' lives, and to improve access to treatment for those living with rare diseases.

What is a rare disease?
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000 people (in the USA it is defined as rare when it affects fewer than 200,000 Americans). There are between 6,000 and 8,000 known rare diseases and around 5 new rare diseases are described in medical literature each week. 1 in 17 people (almost 6% of the population) will be affected by a rare disease at some point in their lives. That's approximately 3.5 million people in the UK, 30 million people across Europe and 30 million people in the USA.

Fact- 50% of rare diseases affect children.

Why is rare disease day important?
This day is so important because it helps raise awareness for little known or often unheard of conditions. Through raising awareness we can improve the quality of care people with rare diseases receive, develop new treatments and medications, reduce the time it takes to receive a correct diagnosis and ultimately work towards finding a cure. Because despite the fact that 1 in 17 people will live with a rare disease at some point in their life there is no cure for the majority of rare diseases and people are often misdiagnosed delaying access to possible treatment (many go undiagnosed). This is not acceptable but thanks to rare disease day things are starting to change. Rare disease day improves knowledge amongst the general public whilst encouraging researchers and decision makers to address the needs of people living with rare diseases.

Fact- 80% of rare diseases have identified genetic origins (others are the result of infections, allergies and environmental causes or are degenerative).

The rare disease I have is Ehlers Danlos Syndrome. Ehlers Danlos Syndrome (EDS) is a connective tissue disorder that causes the body to produce faulty collagen. Collagen is the 'glue' that holds our body together and is found all throughout the body. In your ligaments, muscles, joints, organs, eyes... This faulty collagen weakens the tissues that supports the skin, bones, blood vessels, arteries, internal organs and more. There are 13 known types of EDS that have been discovered (so far) and the faulty gene has been identified for all types except for Hypermobile EDS (H-EDS). 

Symptoms vary depending on which type of EDS you have and no two people have exactly the same symptoms but some of symptoms I personally experience are; Chronic Pain, Easy bruising, Fatigue, Gastrointestinal issues (including Nausea, Acid reflux, Cramps and Early satiety), Hyperextension of various joints, Hypermobility in numerous joints throughout my body, Low blood pressure, Poor proprioception, Subluxations/Dislocations, Soft velvety skin, Tachycardia and Urinary incontinence. (This list is in no particular order and is not a complete list of my symptoms). Like all rare diseases Ehlers Danlos Syndrome is underdiagnosed, underrecognized and misunderstood.

"With research, possibilities are limitless"

For more information on rare disease day click here.

For more information on EDS click here and/or here.


Sources:
• https://www.rarediseaseday.org
• https://www.raredisease.org.uk/what-is-a-rare-disease/

06 February 2019

A to Z of Distractions


Distractions can be a useful coping mechanism in a variety of situations from when you're in pain to when you're depressed. From when you're lonely to when you're anxious.

Below I've listed a few ideas, an A to Z, of distractions you might want to try next time you find yourself in need.

A: Alphabetise your CDs and/or DVDs.
B: Bake or cook something you love.
C: Cuddle a stuffed animal.
D: Draw a picture.
E: Eat your favourite snack/food.
F: Fold origami.
G: Give someone a hug.
H: Hang out with friends (either online or in person).
I: Invite someone over.
J: Join a club.
K: Knit something.
L: Listen to music.
M: Meditate.
N: Name 3+ things you like about yourself.
O: Organise your room.
P: Play a video game/board game.
Q: Quietly take some alone time to relax.
R: Read a book.
S: Snuggle up in a blanket.
T: Treat yourself to something nice.
U: Use positive affirmations (eg "I can do this").
V: Visit someone you care about.
W: Watch cute animal videos on YouTube.
X: eXpress yourself through art or writing.
Y: Yell into a pillow.
Z: Zzz- Take a nap.

I know that some of the ideas listed above may not be suitable for everyone for a variety of reasons. That's why I've tried to include a range of ideas to include something suitable for as many people as possible. I hope you find this list helpful ❤️

01 February 2019

My 'Good Deeds' For January


You may remember my blog post from the start of January (my first blog post) about my New Year's Resolution to try and spread more happiness by completing at least one 'good deed' per month. Towards the end of the post I mentioned that at the end of each month I'd share all of the good deeds that I have completed along with any relevant pictures I have taken. Here is the summary of January's good deeds.

I'd say that I've made a good start on my New Year's Resolution by completing 3 good deeds this month. They are:

• I sent two pieces of happy mail. I decorated the inside of the cards with some stickers and added washi tape to the envelopes. I also added alphabet stickers onto the envelope of the second piece (I forgot to add them to the first).

• I donated to Samantha's Go Fund Me campaign. She's an EDSer fundraising for life saving Neuro-Surgery to fuse her skull and spine.
(If you'd like to donate here's the link)

• I donated food to my local food bank. I donated; 2 tins of potatoes, 2 tins of carrots, 2 tins of peas, 2 tins of sweetcorn, 3 packets of biscuits, 1 bag of quick cook pasta, 1 bag of easy cook rice, 1 jar of hot chocolate, 1 jar of coffee, 1 box of teabags and 1 multipack of crisps. I brought the food from a local supermarket as we use everything we buy, then with my dad's help dropped the food off at the food bank.


24 January 2019

Chase Emotional Wellbeing (Initial Assessment)

On the 18th (Friday) I went for my Chase Emotional Wellbeing initial assessment (Chase Emotional Wellbeing or CEW is my local mental health service). I was seen by the service last year for support with my anxiety and a past traumatic event and I found it very beneficial (the only downside being the limited number of counselling sessions due to the service's limited funding).

I received at phone call at the beginning of the month, checking in on how I was doing and wanting to know if I needed anymore support. I decided to take this opportunity to reach out and seek professional help and support for my OCD. It has progressively gotten worse over the years to the point where those around me have now started to notice that something is 'wrong' and it's impacting my life in a big way. As I'd never told any of my doctors about this before I hadn't been officially diagnosed so I thought this was the right time to get my official diagnosis.

I was rather anxious on the day of the assessment, I didn't know who I'd be seeing as their name wasn't mentioned on my appointment letter or during the phone call. The service had moved premises since I was last there too and I wasn't entirely familiar with the area.

When we arrived, despite my initial worries, we found the building fairly easily thanks to some photos on the back of the appointment letter. Even though the new building is technically wheelchair accessible (unlike the old one) we still had problems navigating it due tight turns, steep ramps and doors that swing towards you. We made it upstairs eventually though (that's where the reception and consultation rooms are) and I signed in.

I was given some paperwork to fill in (17 pages!). I struggle filling in paperwork so it was taking me quite a while and before I knew it the lady who was carrying out my assessment came into the waiting room and asked how I was getting on. I said that I was nearly done and apologized for taking so long, explaining that I struggle filling in paperwork. She was lovely about it and said that she'd help me fill in the rest.

I was taken through to a lovely room which contained two comfy looking armchairs (I didn't sit in one as I use a wheelchair). The room felt like a mini lounge and was quieter than the waiting room so I started to feel a bit more relaxed. My grandad left the room and the assessment started.

She skimmed through the paperwork that I'd already filled in and saw that I wanted help with OCD. I explained that I hadn't been officially diagnosed but I was pretty sure that I did have OCD. I showed her my symptom list (I'd typed everything up and printed it out) and as soon as she read through it she said "Yeah you have OCD". We discussed my complusions in more detail and my emotions surrounding them.

We also discussed the possibility that my OCD has developed as a coping mechanism to help me deal with my chronic illnesses (I can't control my health so I'm subconsciously trying to control other parts of my life). It would make sense as the OCD started around the same time that my health first started to deteriorate.

I also mentioned that I was pursuing my official Autism diagnosis. I showed her my list of traits and other evidence and she agreed that I more than likely am Autistic but CEW can't officially diagnose me. She recommended that I speak to my GP and she can refer me to someone who can. (So when I can pluck up the courage I'll be visiting the GP to discuss that).

After we'd finished discussing how my OCD affects me we talked about what I wanted to achieve from the service and how we'd go about achieving that. The overall aim is to start and get some control over my OCD instead of my OCD controlling me. The service can only offer 4 hours of 1 to 1 sessions due to its limited funding and as my OCD will need longer than that we'll be doing phone consultations as well. We'll tailor the appointments to meet my needs (for example they'll always be in the afternoon as I struggle to wake up in the morning) and if I can't manage a full hour session we can break it down into smaller half hour sessions.

At the end of the assessment she helped me fill in the rest of the paperwork (she asked me the questions then she filled it out). She also gave me some extra sheets to fill in about how my chronic illnesses affect me (those were only one sided though so didn't take too long). We arranged a phone call for the 8th of February to make sure that I still want to access the service (new protocol) and arrange my first appointment.

Summary:
• Appointment went well.
• I got my official OCD diagnosis.
• The assessor was really nice. She was disabled herself so she understood firsthand what living with a disability and chronic illnesses is like.
• I'll be doing both 1 to 1 sessions and phone consultations.

15 January 2019

Postcrossing


In May 2018 I joined a wonderful project called Postcrossing. Postcrossing allows people to send and receive postcards from all over the world. As someone who loves to send and receive any form of snail mail I knew this project would be perfect for me. My mail box had been pretty empty for months and I hadn't received any 'happy mail' in quite some time so joining Postcrossing was a great way to rectify that.

Since I joined 7 months ago I have sent postcards to 14 different countries and received postcards from 14 different countries (I didn't manage to send any postcards for 2 of those months though due to fatigue and various other reasons).

So what is Postcrossing and how does it work?
As I mentioned earlier Postcrossing's goal is to allow anyone to send and receive postcards from all over the world. The concept is simple: for every postcard you send, you will receive one back from a random Postcrosser somewhere in the world. It is completely free to join, the only cost is the money you spend on postcards and postage.

When you join Postcrossing you are given your own profile which you can use to share information about yourself, the things you're interested in and the kinds of postcards you'd like to receive. You can write as much or as little as you'd like. The information you share on your profile will help your postcard sender choose a postcard suited to your tastes and may also give them some ideas of what to write on your postcard.

The process of sending and receiving postcards can be split into 4 easy steps:
1) Write a postcard- The first step is to request to send a postcard by clicking the 'send a postcard' button on the website's homepage. You will then receive an email containing the address of a random member, a link to their profile (so you can find out more about them) and a postcard ID (two letters followed by a string of numbers). The postcard ID is what allows the recipient to register the postcard, making you eligible to receive one in return. When you've received your recipients details simply pick a postcard and write a message, along with the postcard ID and address given.

2) Post it- Once your postcard is finished all you need to do is mail it at your nearest post office or post box. When your postcard arrives the recipient will register it using its postcard ID. This will now make you eligible to receive a postcard yourself. Where your postcard will come from is a surprise.

3) You receive mail- One day you'll check your mailbox and a postcard will be waiting for you.

4) Register the postcard- The final step is to register your postcard using its postcard ID. You can register your postcard by clicking the 'register a postcard' button on the website's homepage.
Note: You can have several postcards travelling at once.

It's so easy to send and receive mail using Postcrossing's system and before you know it your mail box will be full of wonderful, exciting postcards from all over the world.


If you'd like to find out more about Postcrossing click here.

If you'd like to join Postcrossing click here.


Are you already a member of Postcrossing or are you thinking about joining now? What's the nicest piece of snail mail you've ever received? Let me know in the comments below.


*This post is not sponsored, I just really like Postcrossing and I have benefited from the project massively so I wanted to write about it in case it is something that you would benefit from/enjoy.*