Rests, Relapses and Restarts

      There are some MS days where there are little blips that require rest. These are often the body reminding you that you need to slow down a bit or in a really long spell of being well they are the tiny reminders. It’s the MS saying ‘don’t forget me, I’m still here’. They often require a rest day where you simply flake out in front of the TV or in bed with a book and just do nothing. In my case they can manifest as a really fuzzy and heavy head. It’s almost as if my head is too heavy for my tiny stalk of a neck and I need a cushion right behind my head. Sometimes they’re a full blown migraine that requires bed, darkness and quiet for me to fully recover. They’re those niggling little symptoms that resurface here and there; a few pins and needles in the toes and fingers, a patch of numb skin on my left leg or a little bit of foot drop for 24 hours.

    These little rest reminders are very different from relapses. I average about 2-3 relapses a year these days. One often occurs around the start of spring just as temperatures start to change. Another one happens around the autumn and the start of new terms which has always been a real pain when at college or university. The third one is the surprise relapse that can occur at any time; I am currently in an unexpected bad patch that came very quickly on the heels of my recovery from spring. About two weeks ago I woke up on a sunny Sunday morning with sudden unexplained pain in the left side of my lumbar spine. This is opposite to my usual side and came soon after having spinal injections on the right side of my lumbar spine as well as my neck and right shoulder. Most of my weakness manifests on the left of my body whereas my pain seems to be on the right side. My joints ache on the right side as well as my spine. I had the injections and then had 48 hours of agony as the anesthetic wore off and the cortisone kicked in and then I started to feel better. I started to tentatively get up and walk the dog round the block. I had started, as I said in my last blog post, to feel ‘normal’. I actually had a few days where I threw the covers back in the morning and got up feeling okay. Then came the reminder.

     The left sided pain very difficult to describe because it was almost like a hug of pain. It came from my lumbar spine but was radiating round to my pelvis at the front. It felt like I was in a painful chastity belt that restricted my movement and squished my internal organs. My first thought was that I had a UTI (that’s a urinary tract infection for the uninitiated into the kingdom of the sick), but we ruled that out. Then I wondered if there was a problem with my bowels. I talked to the GP and we ruled that out. I couldn't pick up my left foot, or flex it without sparks of agony. I couldn't bend over, or reach for anything without waves of pain constricting me. The GP diagnosed nerve pain, and suggested maybe I was trapping a nerve in my lumbar spine. She recommended rest and a new drug called Acupan which was a nerve blocker and I could take it with my other drugs. It turned out that I could take it with my other drugs, but only if I wanted to spend the entire day sleeping. To be honest for the first few days that was what I did. I still supplemented the drugs with the only other thing that works in these circumstances – heat. I couldn't get down into the bath so we got the hot water bottles back out and started to use 3 of them to get to all areas of pain. So, it was some of the best weather all year, beautifully sunny and dry and I am in bed, in pyjamas with three hot water bottles! This turned out to be a very stupid idea when I feel asleep and sustained a huge burn across my left bum cheek from a hot water bottle that had slipped and exposed a bit of bare rubber directly to my skin.

     I missed yet another holiday. I was gutted because I was all paid up, going with friends and I hadn't been to Cornwall since Christmas 2012. Here I was stuck at home and they were sitting on the beach, visiting the Tate at St. Ives and exploring the little gift shops in Mousehole. I was grumpy. In the thick of it I needed help to sit up in bed, take tablets, eat and drink. I needed reminded when it was time for more liquid or medication because I wasn't with it. Mum had to help me have a bath at one point in as dignified fashion as we could manage. This had now become so much more than a need to rest; it was a full blown relapse. I was exhausted, unable to concentrate, struggling to walk and struggling to use the loo at some points when the pain was very intense. Gradually the Acupan started to work and I felt more able to take only one during the day so that I could be awake for some of it and enjoy some reading or TV. I still needed someone in the house at all times, but I could enjoy things again whether it was an interiors magazine or my favourite soap. Towards the end of last week I’d started to feel well enough to be on my own for some of the time. I could walk to the loo, and to the kitchen to fetch a drink or snack. I couldn't stand for more than ten minutes but at least it gave me gaps to get off my couch and try it out. The recovery had now been three weeks which is unusual for me. My GP recommended an MRI and talking to the pain clinic to get an opinion and maybe a referral, so I contacted them for an emergency appointment. I had injections booked in for September, but needed to talk to them before them. I asked for an emergency appointment and explained that I couldn't walk or stand for any length of time. The clinic appointment arrived in the post the next day, but it was for the last week in August, only one week before I’m going in anyway.

      Now I am facing the fact that I am going to be like this for the rest of the summer. My friend took me out for some fresh air in the wheelchair and although it felt nice to be outdoors it was weird to have someone pushing me around. Although the chair is lightweight I haven’t got the strength to push it myself and there is no way I could fold it and lift it into the car. I am never going to be independent in this chair. So, I now have to accept that unless I am driving door to door, someone is going to have to push me. This is where MS and all other invisible illnesses are awkward and difficult. If you have an accident and suffer a spinal injury you go to a spinal injuries unit where after a period of recovery, you are taught how to use your wheelchair. All the skills of living in this new way are taught before you even leave hospital. If you have MS there is no such help. There is a rehabilitation department at most hospitals and they will provide a chair, but training you how to use it is not provided. No one ever says to you that it is time to start using a chair. It is a lonely and difficult decision and although spurred on by my late husband’s idea that I should look at these things as a tool for independence rather than a backward step. I get that, but still I would love someone to talk to me about what the best thing to do is. I usually know when the need to rest has tipped over and become a relapse. Yet, when does a relapse just become a new level of being?

     

I got to thinking, how would I manage if this is what I’m like now and how do I know? I could be perfectly well tomorrow, or I could still be like this – able to walk a little way, but unable to stand or sit in uncomfortable places. This could be the next phase of my MS journey and if it is I can see myself getting very grumpy, very quickly. I have had to cut so much out of my life and I don’t know how much I’m going to be able to claw back. I am in the position of having to physically take one day at a time. I keep hoping that this is a long relapse and that one day I will suddenly feel better and have a restart, but I am also starting to think that this is it for now. It will take me some time to get used to this difference in ability and my new body image, but I’m sure I’ll get there.