‘Ouch, that really hurts!’ I whinged to my Mum on the phone whilst walking home from work. After a good appraisal with my new team leader at work, I was calling home to have a catch up on everything that had been going on. However, I couldn’t ignore the electric shock sensations going through my left leg, as I was crossing the road and the pain it was causing me. My mum and I, hadn’t put it down to anything in particular apart from maybe being sat awkwardly at work and I felt personally that it was a sign that I had been pretty slack with my fitness as of recent!
When old symptoms returned on a lower level over the last few weeks, I didn’t think much off it and just decided to shake it off and carry on. For instance, the MS hug decided to be not so romantic and instead crippled me when I was trying to focus on my work. This wasn’t as intense as when I first had it and I didn’t think too much of it. Over the course of 3 weeks, more symptoms were appearing and when it got to the point that my left leg was getting painful shock sensations and numbness; it was time to contact my MS nurse and see what was going on.
By this point, the symptoms were affecting my daily activities on a much larger level. The numbness in my leg had progressed to what I call, a ‘gangster style’ limp and my cognitive thinking and vision was beyond awful. I couldn’t read what I was doing at work and I couldn’t problem solve either. My MS nurse organised for a home visit the following day and for me to see the GP on a same day appointment to see what was going on. After carrying out neurological exams on my legs and vision, he advised that this would be deemed as a relapse in my MS. I had returning of old symptoms and the presence of new symptoms. Where it had impacted on my walking and general day to day activities, it was advised that I should treat this with high dosage steroids. This is taken as oral medication on a 5 day course and I have been signed off work for 2 weeks, maybe longer depending on recovery time and referred to Neuro Physio to improve my walking.
Recognising whether you are relapsing can be really tricky when you have recently been diagnosed with MS. So what is a relapse and how do you know if you are having one? What should you do and what can help? These are just some questions you may have to find answers to. With MS they say that no two people are the same. Basically that everyone is affected in different ways and not everyone experiences the same symptoms when relapsing or having a flare up in symptoms.
What is a relapse?
This link from The MS Society website gives a pretty clear definition on what a relapse is and how you can determine whether you are having one. As the time frame where symptoms are experienced is so important, this is why documenting the onset of symptoms is really key to help your healthcare professionals assist with treating your relapse in the best way.
Should I treat it?
Now this decision is something that you need to discuss with your MS nurse or GP to decide whether treatment is going to be the best course of action. For me with this relapse, where my Beyonce style limp was causing me difficulty; it was decided that steroids would be best to nip the symptoms in the bud and to stop any residual symptoms. The idea of steroids, is that they reduce the time that your relapse lingers for, as well as speeding up your recovery time and reducing inflammation caused.
Steroids are not very nice medication to take, which is why discussion with health professionals is very important. They can give you horrible mood swings, acne, weight gain, insomnia, heart palpitations and many more nasty side affects. Although the symptoms experienced are usually short term, they can make you feel awful and you need to be aware of this before starting treatment. I am not over exaggerating when I say that all of the possible side affects mentioned in the leaflet with the steroids, I experienced. Weigh up the pros and cons, discuss it with your health professionals and be clued up on what you may encounter.
Tips and Tricks to deal with Relapse
This is the 3rd relapse I have experienced and the 2nd that has been treated with steroids. I think it’s safe to say it can take a few relapses to be fully prepared for what you will have to deal with both physically and emotionally. In Shana’s recent blog on The MS Society website, she talks about making a relapse nest with essential bits to help your recovery.
Taking steroids with jam, can be really helpful to kick the metallic taste you get with the tablets or IV line. This was something my Mum suggested to me on 1st experience with steroids, as I wasn’t able to keep the steroids down without vomitting. Trust me, I will never be on steroids without jam now! Some people find mints/gum or sweets can be helpful too! Make sure you are stocked up on food and essential bits and pieces. Organise an online grocery shop or get a friend or relative to help you.
You should focus on what you can do, rather than what you can’t with any relapse to help your recovery. My concentration and vision was so bad with this relapse, that having audio books and Disney films; was my saviour to stop me from being bored and going insane! I couldn’t focus on anything too complicated or read properly but my hearing was fine. My walking may not have been on point, but my hands and dexterity were playing ball! I may not be a Picasso, but my lovely colouring in book certainly kept me entertained!
Setting goals and targets I found to also be really helpful. It showed me how far my recovery had come. I documented this with photographs and a tick list. When I initially made a to do list, I found every task completely unachievable as I felt drained and fatigued. Day by day, different tasks are getting ticked, no matter how big or small.
At the start of the relapse, I went to the top of the road to collect my medication from the pharmacy (a trip that would normally take me 5 minutes). It took me a lot longer as my mobility was poor and my balance was very shaky. I wanted to curl up into a ball on the pavement and cry out of hopelessness. In comparison, once the medication had started to do it’s job, I managed to get out of the house to listen to some live music near by. Granted, I had a day ticket to this festival and I barely lasted a few hours. All of my friends were out getting battered and I spent my time sat down not being able to keep up with conversation. Despite this, getting out of the house was a massive achievement in comparison to not being able to make it up the road.
Relapses can take a while to get over completely and although I have a long way to go until I feel back to my normal self; I have made huge progress and I just hope that this continues!
What tips and tricks do you use to help with your relapses? What would be in your relapse nest? Let me know in the comments 🙂
PS: It is World MS Day today. Have you noticed MS being noticed in the paper, on TV or in social media? The MS Society are campaigning about slow diagnosis and the feeling of being left #InTheDark
Let’s raise awareness with the hashtag and carry on donating!