By Rita Chandwani
In Dec 2011 I developed a headache whilst at work that I could not shift, when I came home I decided to just go to bed in the hope I will be fine in the morning. But when I woke up, I could not see. It was terrifying.
It was several months until I regained my eye-sight. In that time I lost my job, I lost my social life and my independence. But I was grateful to the amazing NHS services that treated me so I could see again, and by the summer of 2012 I was looking forward to getting my life back starting with a well-deserved holiday in Cyprus with my sister, because I just wanted to see the sea again.
Sadly, even though my eye-sight returned, I began getting other symptoms. I was finding it difficult to use my hands, I was constantly exhausted and my legs and whole body were in constant pain. The headache I got in Dec 2011 is still around. I simply could not function.
I was diagnosed with Elhers Danlos Syndrome in Sept 2013, a rare genetic condition that has not real treatment path or cure. Just a lot of medication to stabilise symptom and the chronic consistent pain. However, they have side-effects and whilst helping with some issues, they are creating other issues that are making me have a normal life impossible.
In October 2017 my eyesight was starting to become impaired again, this time a slower attack, a growth of a blind spot which grew from a dot to the size of a 10p-coin. I could not believe this was happening again. Luckily I was seen straight away and within weeks of treatment my sight returned. But as this was now the second time, along with the MRI scans on my brain – they had enough to diagnose me with MS.
I have spent many years unwell, and am constantly looking for that treatment, diet, medication that will make all of this go away. I am constantly researching and regularly find so many people who claim they are getting relief and benefits from Cannabis. But as I live in England I cannot get it legally or safely. I could get it if I lived in Germany or Canada.
We’re not talking about joints or spliffs, I don’t smoke and smoking can make MS worse. Sativex is an oral spray which prevents health problems associated with smoking. If allowed, I will know what I am taking is tested, not laced with other chemicals as can be the case with Cannabis available from criminal sources and the dose can be measured under medical supervision.
The recent case of Billy Caldwell triggered the nation and the Government into looking into this. It raised my hopes, that finally I could try something that could work.
The papers today are announcing that Cannabis is now available for medicinal use, I should be celebrating and on my way to the pharmacy with my prescription. But I am not. Because the way this law change has been implemented means I still cannot get access to a drug that may change my life.
The new guidance does not specify it can be used to treat the spasms and stiffness caused by MS, nor does it recommend Cannabis for pain despite the clear evidence from the Chief Medical Officer, Dame Sally Davies who conducted the Government requested review in the summer.
I feel so let down, but I don’t want this opportunity to pass – a simple review of the guidance can change this for so many people like me with MS. The MS Society are campaigning and lobbying NHS England for an urgent re-visit of the guidance, taking into account Dame Sally Davies’ evidence so that people with MS can get the help they need.
You can help, you can write to your MP today to ask them to support the MS Society’s call for this urgent change.