Welcome to Our Founder’s Blog

Rebecca's new facebook profile

Hello readers, welcome to my blog. I will start of by telling you a little about myself. My name is Rebecca Groves, I’m 26 and live in Cornwall. I have multiple sclerosis, and am the founder and director of Patients Campaigning For Cures (PCFC).

Patients Campaigning For Cures is a non-profit organisation, set up to increase awareness of the dangers to human beings of taking drugs that have been tested on animals, and to encourage scientific public debate about this hugely important issue. At the moment, drugs that are intended for use on humans, are tested on animals first, to see if they appear safe. This method is not only over 100 years out of date, but has been scientifically proven that it does not work and is dangerous to humans. There are several reasons for this, firstly, animal bodies are completely different to humans and do not react to drugs in the same way that humans do. Also, often the animals that the drugs are tested on do not get the disease that a specific drug is meant to treat. For example, drugs that are designed to help MS patients like myself, are tested on rats. Rats do not naturally get MS. Rats are given things that imitate the symptoms of MS, and then given the drug in question and monitored to see how they react to it. Even if the rats do not react badly to the drug, it in no way proves that it is safe for human use, our bodies are just way too different.

The purpose of this blog is two-fold, the first reason for writing it is to raise awareness of our non-profit organisation and keep our supporters updated with our progress, and the second reason for writing this blog is to give people an insight into what it is like to live with MS. MS is a hard illness to live with, it affects various aspects of your life, from your mobility to your ability to swallow. The reason for this is that your central nervous systems controls pretty much everything your body does, and in someone with MS, their central nervous system is being attacked by your immune system and lesions are formed in your brain and spinal cord.

MS is a very complex disease and affects sufferers in different ways, although there are some symptoms that sufferers have in common, like fatigue. It is also very unpredictable and you never know how you will feel from one day to the next. This makes planning things very difficult. I try and get round this by making two sets of plans. For example, say I had planned to meet a friend for coffee, but I woke up and I wasn’t feeling well enough to go out, instead of cancelling it completely, I would ring my friend and say that I wasn’t well enough to go out, but they could come round to my house for a coffee, that way, I am not letting people down so much and I still get to see my friends. Sometimes the fatigue can be so bad, that just getting up and dressed can make you so exhausted, that you have to have a sleep straight after. Also, you never wake up feeling refreshed, you wake up feeling like you haven’t been to sleep, even when you have slept for 12 hours! I often feel guilty about spending so much time asleep but there is nothing I can do about it. I have been called lazy in the past, which I find very hurtful, as I am not at all lazy.

Another symptom I struggle with daily is pain. Although the amount of pain I get varies from day to day, there is never a single day where I don’t have any pain. I have some amount of pain 24/7, and no painkillers will take it away. The pain isn’t just in one place either, it is all over my body, there is not a single part of my body that doesn’t hurt! The type of pain varies too, sometimes it’s a dull ache, sometimes it’s like pins and needles, other times it’s an intense burning, and sometimes some of my limbs are completely numb. This makes daily tasks very difficult. For example when my hands hurt or are numb, I struggle to do really simple things like use a knife and fork or hold the phone. Personal care such as getting showered and dressed becomes really hard, that’s why I don’t wear things with buttons, as I often can’t do them up and one of the reasons I keep my hair very short, is so that I don’t have to worry about doing anything with it.

Well, talking of pain, my hands are now getting too painfully to type, so am going to have to finish up here for this entry. Thanks for reading and I will update you all soon.