Cure Girl Lolly: “My Battle with Medication”

Cure Girl Lolly La mia battaglia con i farmaci_Fotor

After being paralysed for over 10 years, I made a big decision to come off my medication which I took for chronic pain. To be honest it was for many reasons not just one but I didn’t realise what was ahead of me. The drug I took is used to treat nerve pain after a spinal cord injury. I suffer with CHRONIC neuropathic pain which can get unbearable at times, like many other people living with a spinal cord injury. I went to see my spinal consultant, who is lovely and through her advice I was weened off over a period of 6 weeks; so gradually and under professional advice.

As the medication started to reduce, that’s when the trouble started. The insomnia kicked in straight away and the pain kicked in stronger. Then I started to get nausea which lasted all day and all night. I used to perspire so much but then be shivering at the same time, just like you see people who are drug addicts. I couldn’t believe what was happening to me. I was crying everyday, feeling so depressed and low, what with the lack of sleep it was just like torture. There were so many other withdrawal symptoms I had such as loss of appetite, itchy skin, upset stomach, lack of concentration. The list is endless! I could not believe what I was experiencing and I had to google my symptoms as I couldn’t believe it was due to coming off my medication but when I read the stories of other people’s experiences I was in total shock! Most people saying that they had to go back on the drug as they could not handle how awful they felt.

I contacted my consultant and she couldn’t believe that my withdrawal symptoms were lasting so long, but I decided to carry on and hope that the symptoms would eventually wear off. All in all these lasted for 3 months. I have to say it’s one of the hardest things I’ve ever done and I don’t know how I got through it but I did. Now 18 months later, medication free I am so glad I did it. Yes, I still have chronic pain 24/7 which never goes away but I try and use other methods to deal with it. The thing is the medication never took the pain away it only took the edge off so what was the point? The benefits for me for coming off are remarkable, I’m finally at my weight I was 12 years ago pre-injury and dropped 2 dress sizes. I feel better knowing I’ve a healthier lifestyle and my skin looks better too.

People are unaware of so many health issues that go along with spinal cord injury and we are given so much medication from the time we are hospitalised with our injury that when we leave to come home after having so much crap to deal with as it is that we don’t question WHAT exactly it is and why. Be aware of what you’re taking and why. It’s taken me so long to write about this as just remembering it is awful.

On a night out with my friend Michelle we bumped into Russell Brand in our local pub and she told him about what I’d done and he said: “I bet it was more difficult for you coming off prescription drugs than it was heroin”. That sentence made me think he’s bloody right!

Bottom line is be aware with what you’re taking!

Chronic spinal cord injury must become curable!

 

Cure Girl Lolly

Annunci

FOOLISH NEUROSCIENTISTS WANTED!

WantedThe Cure Girls are looking for neuroscientists crazy enough to think that CHRONIC Spinal Cord Injury can become CURABLE!

“Here’s to the crazy ones. The misfits. The rebels. The troublemakers. The round pegs in the square holes. The ones who see things differently. They’re not fond of rules. And they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them. About the only thing you can’t do is ignore them. Because they change things. They push the human race forward. And while some may see them as the crazy ones, we see genius. Because the people who are crazy enough to think they can change the world, are the ones who do.”

“Stay hungry stay foolish” – Steve Jobs

If you think you have this spirit in your blood please write us at: curegirls@gmail.com

Tell us what you think is needed to find a cure for CHRONIC Spinal Cord Injury and we will find a way to support you.

We will do WHATEVER IT TAKES to make it happen!

Cure Girls

A.A.A. NEUROSCIENZIATI FOLLI CERCASI!

annuncio italianoLe Cure Girls sono alla ricerca di Neuroscienziati talmente folli da credere che una cura per le Lesioni Spinali CRONICHE sia davvero possibile. Persone che antepongano la voglia di riuscire a raggiungere il vero obiettivo finale al numero di pubblicazioni e all’impact factor necessario per essere considerati abbastanza produttivi e di successo. Neuroscienziati capaci di pensare in modo differente, rompere gli schemi mossi dalla passione e dalla voglia di cambiare le cose, perché trovare una cura per la paralisi è davvero qualcosa che cambierebbe il mondo:

“Solo coloro che sono abbastanza folli da pensare di poter cambiare il mondo lo cambiano davvero!”
Quelli che non si adattano.
Quelli che non ci stanno.
Quelli che sembrano sempre fuori luogo.
Quelli che vedono le cose in modo differente.
Quelli che non si adattano alle regole. E non hanno rispetto per lo status quo.
Potete essere d’accordo con loro o non essere d’accordo.
Li potete glorificare o diffamare.
L’unica cosa che non potete fare è ignorarli.
Perché cambiano le cose.
Spingono la razza umana in avanti.
E mentre qualcuno li considera dei folli, noi li consideriamo dei geni.

“Stay hungry stay foolish” Cit. Steve Jobs

Se pensate di essere questo tipo di ricercatori, contattateci, diteci cosa secondo voi è necessario fare per trovare una cura per le lesioni spinali CRONICHE scrivendo a curegirls@gmail.com e noi cercheremo il modo di supportarvi.

Cure Girls

Lolly alla BBC Radio di Londra

cure girl Lolly

Mercoledì 13 gennaio sono stata felicissima di partecipare alla trasmissione Drivetime Show in onda su BBC Radio Londra e di essere intervistata dal brillante Eddie Nestor .

Ero un po’ nervosa ma allo stesso tempo eccitata perché avrei avuto modo di raccontare la mia storia, promuovere la mia ultima raccolta fondi e parlare della missione delle Cure Girls “in diretta” alla radio!

Il Dr. Mark Bacon, direttore esecutivo Clinico di Spinal Research mi ha accompagnato ed ha parlato di quanto sia complessa la questione cura snocciolando statistiche riguardanti le persone che vivono con una Lesione Spinale nel Regno Unito e sottolineando il fatto che la Charity non è finanziata dal governo.

Lolly bbc radio londra
Io invece ho parlato della mia ultima sfida, una pedalata virtuale di 285 miglia (la distanza tra Londra e Parigi), che sto percorrendo con la mia bici FES per raccogliere quanto più denaro possibile a favore di Spinal Research.

Questa intervista è stata una grande opportunità per promuovere la ricerca di una cura e in seguito ho ricevuto un sacco di messaggi di sostegno da parte di persone incantevoli e anche alcune incredibili donazioni.

È ancora possibile ascoltare l’intervista cliccando qui e spostando il cursore a 2 ore e 6 minuti. Se volete inoltre potete ancora fare le vostre donazioni cliccando qui .

Vi ricordo che qualsiasi piccolo aiuto potrebbe potenzialmente permettere di curare la paralisi.

Grazie mille!

Cure Girl Lolly