Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘fundraising’

My Novel & The Dystonia Society

 

Preorder a copy of my debut novel here & help raise money for The Dystonia Society – https://www.britainsnextbestseller.com/beta//books/?id=55

Check out the trailer for my upcoming novel here https://www.youtube.com/watch?v=bDgQZ1zrS8Q

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Time For A Change

I haven’t blogged in a while. When I am asked why my automatic answer is because I have had a lot on my plate with studying for my upcoming exams. However I have this nagging voice in the back of my head that’s pushing me to admit that there is more to it than exam stress. The combination of Dystonia and Complex Regional Pain Syndrome is hard to cope with. Emotionally getting my head around it has been hard. Whilst the CRPS is not as bad as when I had it in 2009, it is still able to cause enough pain to cause seizures.

the-duff-posterI went out with a close friend to the cinema today to see The Duff ( a fantastic romantic comedy). It was the perfect medicine in more than one way. It had me laughing and finally relaxing in my own skin and switching off to the constant pain. The film enforced the message that you should accept, be happy and own yourself; that you should not change for anyone. This helped me to really wake up and realise that I had been thinking of myself as a condition not as a person and hiding away. We have no idea what way any of my conditions will go. I might deteriorate over the years, I may improve, or I continue to be on this rocking seesaw. Not knowing is ok, I have now accepted that. However I have to stop letting that hold me back from living life. For far too long now I have thought to myself I shall do that when I am a bit better. We have no idea if or when that will happen. That’s ok, I don’t mind, as long as I keep living. So it’s time to make a change and accept that I’m ill, but life goes on.

On a side note we have started planning our May tea party to raise money for The Dystonia Society. So keep a look out for updates!

Clinging To Hope

Frustration. Worry. Pain. Hope. Joy. A selection of the emotions that over the last few weeks I have experienced. I have improved leaps and bounds since I started new treatment for Chronic Neurological Lyme Disease several weeks ago, there is a long way to go but the improvement are more than I could dared to have hoped for. Yet I feel like I am clinging to these improvements, that they might slip away at the slightest wrong move.

I must admit that on some level I am fuming that it has taken 16 years to get diagnosed. I have spent the majority of my life ill, passed from one specialist to the next, having test after test. The result of their continued ignorance is that I shall now have to live my life with Dystonia. I was not born with it, as far as we know it is not genetic, if I had simply been given antibiotics when I was six or in the couple of years after that I would not have to live with (a currently incurable) movement disorder.

I would not have to cope with the agony of my jaw dislocating due to spasms, or my neck twisting hideously. My ligaments throughout my whole body would not have been so stretched due to spasms that it shocks physiotherapists at the extent of the damage. I would not have developed pain triggered Non Epileptic Seizures if not for Chronic Neurological Lyme disease and Dystonia. I would not have spent 10 hours unconscious seizing in A&E on New Year’s Day 2013. I would not have collapsed and seized in the middle of roads, on the stairs, in shops etc. I would not have put my family, my friends, and myself through hell and back.

Although I have always been ill in one form or another it was not until 2012 that it became disabling, right at the end of my first year of Midwifery training. As many of you know, Midwifery is my dream job, and I hope to one day be able to go back to my training. More than Midwifery I dream of life without illness (I except I have to live with Dystonia). A life where my family don’t have to plan their activities around my health. A future where I can live life to the full without worrying about the impact it will have on my health! Without full treatment for Chronic Neurological Lyme Disease I won’t get better. I will continue to deteriorate rapidly. Lyme Disease has claimed the lives of too many people already I don’t plan on being its next victim. I need to raise £10,000 to fund vital treatment if you are able to please help or share this page/link! https://fundrazr.com/campaigns/erfg6/ab/04081d

 

Thank-you!

x

 

London Marathon 2014

Last Saturday my family and I went up to London to watch my cousin David and his lovely friend Sam run the Marathon to raise money for the Dystonia Society. It was such an amazing day. We were extremely lucky with the weather, and managed to get a fab viewing spot at the halfway mark. This was perfect as not only did it enable us to have a great view of everyone but it also meant we had a chance to grab David as he ran past and take a quick photo with him.

I’m thrilled to say that David and Sam have achieved their sponsorship target and have raised over £3000 for the Dystonia Society which is just incredible.  I had never met Sam before so it was fantastic to finally meet her at the celebratory dinner. Watching them run was so emotional and inspirational and I extremely thankful to them both for taking on such a huge feat.

Tea Party Fundraiser

Saturday we held our Tea Party fundraiser for the Dystonia Society. The day was a complete success with many more people than last year showing up which was an incredibly uplifting sight. My body was still playing up a lot, this meant that I had several pain triggered seizures as my new leg spasm was aggravating the torn ligaments in my knee. However I view having these spasms in front of everyone as a complete positive, they got a good look at what Dystonia can do you.

A good family friend had offered to make a cake to raffle off for the occasion. She is very talented, and the cake looked so delicious! 

Our house was packed all day long which was amazing to see. The Dystonia Society had sent us lots of useful leaflets which we had put on display around the house, everyone seemed to enjoy these and it sparked lots of different questions. Raising awareness has become such a big passion of mine, so I was overjoyed at how successful the day was. One of the elements I loved about it was that the people who had come along could also ask members of my family questions and talk to them about it. Even though they don’t have the condition their lives are still affected by it.

In total so far we have raised £425.00 for the Dystonia Society and some more people have said they would like to drop in donations which will boost our total even further. I am so grateful to everyone who came along, it was such an incredible day.

This weekend my cousin David and his friend Sam are running the London Marathon to raise funds and awareness for the Dystonia Society. They are aiming to raise £3000! He was interviewed by his local newspaper the other day, which has raised more awareness of Dystonia! If you would like to read the article here’s the link http://www.thewestonmercury.co.uk/news/seaquarium_boss_inspired_by_cousin_to_run_marathon_1_3533729 .

Fundraising and Awareness

As many of you the Dystonia Society is a charity that is very close to my heart. Without the amazing work they do I would not have known who to turn to in the beginning, I would most likely still be looking for a diagnosis. The support they provide is invaluable to so many sufferers and the website is full of information that is constantly being updated. They also help provide funding for research, this is vital as you never know whose research will one day find a cure to Dystonia. For such a small charity they provide an amazing service, however they are reliant on donations. This is why each year I do lots of fundraising activities and awareness campaigning.

My cousin David and his fabulous friend Sam are running the London Marathon in a couple of weeks’ time. This is something I admire them greatly for doing. They are aiming to raise a total of £3000 for the Dystonia Society. Now some of you may be thinking that’s a mighty high target! Well, that’s because the London Marathon organisers charge charities £2000 a place! So for charities to actually gain any money from donations the targets have to be placed extremely high. However people who have not gained a place through a charity don’t have to pay anywhere near this amount of money to run!  If you would like to help David and Sam achieve there £3000 target here is their Just Giving link http://www.justgiving.com/DavidandSam2014.

A fab company called Recykilt are running a competition so if you like to win a one of kind Recykilt cushion, when you donate simply type the words Recykilt in the comment box, make sure you have included your name. You can see examples of previous cushions here https://www.facebook.com/recykilt/media_set?set=a.171278609595603.40296.100001403947434&type=3

David has been doing other bits of fundraising as well, with his previous company even joining in. So to help out we are throwing our annual Dystonia tea party earlier than normal to raise money to add to David and Sam’s total. As usual our tea party will consist of all the cake and tea/coffee you can eat and drink, along with lots of information on Dystonia. The Dystonia Society have been very kind and provided us with some fantastic leaflets so if anyone has any questions that I don’t know the answers to then I am sure they will be in there. 

Last year myself and a lady in America organised an event called Go Blue. Well this year, I am encouraging everyone to Go Green during awareness week (May 3rd -11th), which is the Dystonia Society’s colour.  Whether you dye a lock of hair green, dress in green, wear green make up etc., it does not matter as long as people know what you’re doing and why. Encourage as many people as you can to get involved, take a photo and spread the word.

The Dystonia Society are also using a website called Thunderclap that co-ordinates sending messages out for groups of people. The aim of this is that on the 9th May a mass message gets sent out at 1:30pm through the social media network saying ““Help us raise awareness of #dystonia, a neurological condition that causes muscle spasms. Do it for dystonia! http://thndr.it/1fXu9dr” The more people that sign up to Thunderclap, then more people will see this, it is a fantastic awareness tool, but it will only work if lots of us sign up to it.  You can register through your Twitter and/or Facebook account with them, and it sends out a message on your behalf at the set time during awareness week. You can register here https://www.thunderclap.it/projects/9777-dystonia-awareness-week?locale=en .

I have some other fundraising and awareness ideas up my sleeve, but until they are certain I shall keep them for another blog post. Raising funds, and awareness is the only way Dystonia will ever be cured, so please share this, donate, and sign up!

Peace of Mind

The last several days have been very busy and very positive.  I finally feel that I am getting things in place that I need and have an aspect of control. As I have little control over parts of my body, having control over some aspects of my life is very satisfying and makes up for my Dystonia alien crazy ways.

This coming Monday I am going to my local hospital for an appointment with the Orthotic department. My splints have served me well over the last few months, however as it has gotten  colder my spasms in my legs have gotten worse. My right leg spasms so strongly that it often manages to escape my splints. I am hoping Orthotics may have an idea of what they could do to help. If not I have some images of some splints that I think may be able to contain my legs. It would mean having a solid front section to the splint as well as a solid back, this I think would work well as it would be a lot harder for my leg to break through. I’m looking forward to hearing their ideas.

When the Dystonia hit my legs I was given your standard NHS wheelchair – lets describe it as sturdy. My poor mother struggles to lift it in and out the car, and watching my friends lift it makes me feel awful. Recently however the functional paralysis that I experience on and off has meant that my wheelchair needs some extras added to it but this is not something that is possible. This has meant that  when I have an episode of paralysis affecting my back I have ended up flopping half out the wheelchair and being stuck till it comes back.

So after a couple of weeks of pointing this out repeatedly to the NHS Wheelchair service I am now being reassessed to see if I qualify for a voucher that would enable a chair to be customized for me.  Even better news is that the even with all the extra things added to it the chair will still be much lighter than my current one.

Knowing that my splint and wheelchair issues are going to be dealt with has given me such peace of mind and enabled me to relax. They are such small issues but in the long run have a big impact so having the two solved will make a big difference.

Last Saturday I attended a bring and buy sale at my local Church. One of the stalls was raising money for The Dystonia Society. In the end just over a £100 was raised, which is incredible. I would just like to say a huge thank-you to everyone involved.

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Generosity, Kindness & Fundraising

Several weeks ago, I had the chance to meet some fantastic women at a fundraising event where I gave a talk about Dystonia and life with it. Two of the women – Beth and Sheila – decided to do some of their own fundraising to enable me to get a special bath lift with chest and pelvis harness.

On Saturday I went over to the last event to meet 12 amazing women, who I must say are impressively creative. The had raised an incredible amount of money which will mean I can now have baths and showers safely. In the summer when we went away thanks to a downstairs wheelchair accessible shower as I was able to shower for the first time in a year, and I have been really missing that since.

It is amazing the mental boost a shower or bath can give you. Obviously being clean gives you a boost, but the natural pain relief and relaxing element of hot water is such a fantastic way to get alternative relief to pain.  Currently I use a basin of water, some lovely lavender body wash and a sponge, and whilst I know that I am clean it is not the same cleanliness feeling that a bath or shower gives you. I am so excited to be able to bathe/shower again!

Once I figure out how to get the photos off my phone I shall upload some photos from Saturday. These women were so generous and I feel so privileged to have gotten the chance to meet them!  This is one of those moments when in a way I am glad I am ill as I would have never met such kind wonderful people otherwise.

 

Craft Fundraiser for Dystonia.

Today I attended a craft fair that was fundraising for a school and for the The Dystonia Society. I had been rather looking forward to it as it was a great opportunity to raise awareness and to restock my craft supplies – I love to crochet. The fundraiser was busy all day which was fantastic and over £200 was raised for The Dystonia Society.

About halfway through the day I got the opportunity to give a speech on what Dystonia was and what life with it was like. I was slightly nervous that I would be useless and just woffle, but have been reassured the speech was ok 🙂 . I drew on my experiences of living with generalised Dystonia, and whilst I tried to only speak in a positive way, I also spoke in a realistic manner, and sadly Dystonia is not a pink fluffy ball of positivity. I found out afterwards that my speech had reduced some people to tears, which I felt bad about, but it had also inspired several people to do their own fundraising for The Dystonia Society which is incredible!

My church has chosen there september mission to be Dystonia. So they shall also be raising awareness this month which is incredible! I feel very lucky that they have taken on this cause. It was a fantastic day today, and I am so thankful that I was well enough to go down and meet such a lovely group of people.

 

A Fairly Positive Week

I have had some really positive moments this week! On Tuesday I had a meeting with a woman who works for a service called Cross Roads. Their service provides a range of support. On a Thursday morning, starting in a few weeks time, a guy is going to come over to care for me for a few hours. This means that my mum and stepdad will get a break from caring for me, instead this guy will socialise with me and help me with my meds etc. Not only will this give my parents a much needed break but it will be great for me to socialise with someone who’s around my own age. I am really looking forward to this starting.

My Jaw and neck spasms are rather bad at the moment. I am doing my best to try to ignore them but it is a bit had to ignore the spasms when your head is completely lopsided and your jaw is pushed right across. We contacted my consultant a couple of weeks ago asking to be booked in for Botox treatment, but as has been the case for over 2 months now, he has still not replied to any of our emails. We are going to phone his secretary tomorrow to ask her to chase him, however she never sees the consultants she works for and can only email them, so I am not sure how much she can do for me.

Yesterday and today have been amazing. Yesterday I had another fantastic session with my personal trainer that left me exhausted but extremely happy! I just love my Wednesday sessions. Today I went up to the stables and had a wonderful RDA riding lesson. I rode Nelly again, she is such a beautiful horse and fantastic to ride. She is slightly more challenging to ride than Connie but I love this as it allows me to work on and develop my skills more! Being around horses and riding puts me on such a high, if I did not have to dismount at the end of the lesson I would stay on the horse for hours! Riding is pure bliss!

As many of you know I took part in several fund-raising activities to raise money for the Dystonia Society and ended up raising more than £800!! Last week I had an email from the Dystonia Society saying that I was their fund-raiser of the month. If you would like to check out my interview please click on the following link http://www.dystonia.org.uk/index.php/component/content/article/5-get-involved/370-fundraiser-of-the-month

 

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