A day in the life of an MS patient

Written by: Clark French

I was diagnosed with Multiple Sclerosis (MS) in August 2010, it hit me fairly hard and after a succession of severe relapses that showed up on the MRI scanner as lesions in my brain, I was accurately diagnosed. My relapses had been so severe that the first port of call for the neurologist was the prescription of heavy disease modifying drugs, in particular a drug called Tysabri which is usually a secondary line treatment and isn’t usually offered upon diagnosis. After turning Tysabri down and saving the British tax payer close to £16’000 a year for doing so. I found cannabis, became a medical cannabis patient and my symptoms have improved ever since.

I still have a number of recurring daily symptoms which many people with Relapsing and remitting luckily do not get. Cannabis improves my life dramatically and helps with long term management of my illness but it is important to say that it does not completely negate the effect MS has on my life; I am often in pain and have severe spasms and other quite gruesome symptoms. The thing with the pain is that it varies so much from day to day that I originally was not sure what kind of day I should write about in this article, I decided that somewhere in the middle would probably be best as not much happens on my worst days apart from being helpless and needing to medicate heavily. On the other side, during my very best days I can do more than many other people suffering from chronic conditions, which I am very thankful for. Taking all this into account, I decided that the middle ground was probably the best place to start.

Getting up with MS

The thing about my MS that really makes a huge difference to every other symptom is that I get very very fatigued. This usually means that I wake up and don’t feel very rested – today was no different. I wake up just before 7 am as someone outside slammed a car door quite loudly. This was kind of frustrating as my chest is really hurting which keeps me awake. I decide to lay in bed for about half an hour before getting up and out of bed. My legs are stiff and the bottom of my feet have a dull ache – as if I had been standing up for way too long the day before. My calves and thighs are also quite tight. As soon as I am up, I take the opportunity to medicate with an indica-dominant cannabis strain– usually I’d rather a sativa in the morning but the pain warrants something a little stronger and it was left over from the night before so it made sense. I am slow on my feet and my balance is definitely a little off as I need to use walls to navigate through my flat.

Banding

One of the worst symptoms I experience is called the MS hug or banding. Whoever called it a hug must never have experienced it as it is not a nice pleasant experience; it is horrible and extremely painful. This is one of the symptoms which I got when I had my first major relapse. I was told not to worry and that it would go away. It is now coming up to 5 years since it started, and it is still here. It is 24/7 and I never get a day off. It is worse on my right side and feels like I am being stabbed in the side. It is actually the small muscles between my ribs which are constantly having spasm. Speaking of spasms, I am having some small ones on the bottom of my feet too.

The spasms in my feet come about once every 15 to 20 minutes and are really painful. Like a cramp but worse. It comes for about 10 seconds of agony then it starts to ebb away. I can feel it building up and have learnt that scrunching my toes up just before it starts to happen can sometimes stop it or at least reduce its severity. A few dabs mean that the intervals between spasms get longer and by 2pm they have virtually stopped. I need to eat something but I am not very hungry, again something which cannabis helps with greatly. After medicating I manage to eat a wrap and have a cup of tea.

Leaving the house

Now I need to go to the bank which I can see out of my window as it is just down the road. I don’t want to go as my feet are really hurting but I have put it off a few times now so I really do need to. It takes me ages to walk down as each step is like walking on glass. Pain shoots up my leg in every step, on the way back I have to sit down on a wall for a few minutes despite it only being a few hundred meters. The way back is slightly up hill so I struggled more and really needed my walking stick for balance as well as to take some of my weight off of my legs. It wasn’t fun but I did it and came back home. The stairs were very difficult on the way up and I had to go on all fours and use my hands to get all the way up. First thing I did was sit down to a dab of some Concentrates. This takes the pain away to such an extent that I find myself cleaning my table before I have noticed – 10 minutes later the pain starts to kick back in and I take a break, sit down and medicate again.

An evening with MS

A few posts to the United Patients Alliance social media accounts and I’m very tired by this point in the day, there is just enough time to roll one before 4.20 which I do and then see in the evening with a few episodes of ‘Futurama’ before eating a vegan chili. All my energy has gone into the bank and my short cleaning spree so now I don’t have much choice but to try to relax and forget the ever increasing pain in my chest, calves, thighs and bottom of my feet. Every time I medicate I feel a little better but as the evening goes on I feel more and more tired. Not like your normal tired but like I have just run cross country or something and have spent lots of energy. The MS hug means I’m spending lots of energy each day on those muscles being tensed which means that even with the small amount I have done it has put a lot of work into that and means that my tiredness doesn’t accurately reflect the amount of activities preformed in the day.

The pain in my chest starts to build up and I’m finding it increasingly difficult to be comfortable in any position, I use the last remaining energy I have to do a few exercises my physiotherapist recommends which helps to relieve my back as it tends to take quite a battering from the hug. I then smoke a joint which helps me relax enough to be able to head to bed and fall asleep.

Conclusion

MS does have a big impact on my life. However, cannabis helps me to manage it in such a way that I can do more than I otherwise would have been able to. It helps me immensely and for this reason I feel obliged to stand up and be counted. Patients like myself need to be allowed legal access to cannabis and I hope that by telling my story, more people will be inspired to stand against prohibition and call for a sound, evidence-based policy.