Through the eyes of an MS Warrior

After returning from a holiday abroad, the dread of returning to your day to day life can be depressing to say the least. When you also have your MS giving you grief, it just adds insult to injury!

I recently went to Portugal with some of my nearest and dearest for a week away, which was a well earned break. It became apparent towards the latter part of the week, that I had picked up a lurgy of some sort and Bella was having a grumble as a result of it. I initially put this down to something I’d eaten or maybe just adjusting to the hotter climate.

I had many days on my return to the UK of having hot and cold sweats, awful vertigo and feeling nauseous. I noticed when I returned to work, I still felt incredibly weak and defeated. After seeing the GP for a once over, he advised it sounded like I had caught a virus and to take things easy. With that in mind, I cancelled my weekend plans with the hope that more rest would help me feel better.

On the Saturday morning, I then experienced difficulty in emptying my bladder and also noticed blood in my urine. Having had previous issues with this in the past which has been linked to my MS (see MS Society information on bladder issues), this was the first indication that Bella was about to throw her toys out of the pram. Off to the out of hours service at the hospital I went and after a specimen was tested, it was confirmed I had a bladder infection and I was given antibiotics to help clear it up.

The following week I also experienced pain by my wisdom tooth and noticed I had very swollen gums. After I had an emergency dental appointment, I was given another course of antibiotics to combat yet another infection.

The medication I am currently on for my MS, Gilenya, is an immunosuppressant. This means that it keeps immune cells trapped in the lymph nodes, to prevent them from reaching the brain and spinal chord. In MS, if these cells are to reach your nervous system, this is where they would then begin to attack the myelin sheath which protects your nerves. Due to the immune system being weakened by the medication, the body becomes less resistant to infections and it becomes trickier to treat infections that are picked up. In short, aside from Bella having a paddy when I get ill, my drugs do not help my recovery time either.

One virus, two infections and one incredibly suppressed immune system later, Bella gave me a relapse to add to the mix. This resulted in new and previous symptoms coming out of the woodwork. My vertigo was horrendous and my limbs were visibly shaking. I experienced numbness and heaviness in my arms and a constant headache which was sensitive to light. I didn’t have the ability to walk unaided and I spent a long time in bed with the worst fatigue I had ever encountered. I could barely string a sentence together due to brain fog and my vision was blurry and distorted.

With each flare up or relapse I experience, I learn more MS life hacks to help me combat some of the difficulties I face.

If even one of these tips can help one person, they are worth sharing!

  1. Make sure your walking aids are accessible at all times! I have 4 walking sticks that I have acquired through forgetting to pack my stick on days out. I placed these in areas such as the top of my stairs, the kitchen or bathroom to help assist me if I had a wobbly moment and needed something to cling onto.
  2. If you feel too weak to stand up in the shower and you don’t have a shower seat installed, opt for a bath instead. It can often be tempting to not bother at all when fatigue leaves you bed ridden, but keeping up with self care is really important. I also like to jazz up the bath with a bubble bar or a lush bath bomb, to give myself a bit of a pamper session and improve my mood! Put extra towels around the bath if you are afraid of slipping when getting in and out.
  3. Grab a TENS machine, if you are experiencing muscle pain. You can get these really easily online or in a pharmacy and the electric current can help ease pain.
  4. Be prepared that even when you are fatigued, you may not be able to sleep as well as you do usually. Poor sleep can be encountered in MS and I find especially if I have body
    spasms, this can interrupt a good nights sleep.
  5. When your vision and balance are poor, consider using a chair or stool to sit on when cooking. Before I did this, I was lying on the kitchen floor preparing food which is obviously beyond ideal!
  6. Keep your medication in a place where you will remember to take it and if you are running low on medication, ask for friends or family to assist in collecting items you may need.
  7. Make notes or keep a diary of how your symptoms have progressed. I am notoriously awful at remembering to do this or having the energy to do this, but I am trying to improve! When it comes to your next neurologist appointment, it is often easy to forget how awful things felt or the time frame of what occurred. It can also help medical professionals get an idea of whether your medication is working for you.
  8. Never underestimate an adult colouring book to prevent boredom! If your vision is bad, pick one with larger images, that don’t make you feel cross eyed!
  9. REST. This is by far the most boring thing to be told when you want to feel better and get back to normal (believe me!). Apart from taking steroids to speed up your recovery, resting is the only thing that can be done to help you get over an MS episode. Listen to your body, as you’ll only end up upsetting it more if you go overboard.
  10. Give yourself a mini fun project. I decided to put together a concert scrapbook, which I could do in my own time from the comfort of my bed. Not only did it give me something to do, reminiscing lifted my mood drastically.
  11. If you don’t feel well enough to get out of the house by foot, try to get out by car with someone. Looking around 4 walls can make you feel like you are going stir crazy. My mum will usually take me out for a drive in the car through the countryside, to get me out of the house. I do find myself telling her to drive slower than normal if my vertigo is bad, but it’s good to see the outside world!
  12. Don’t dismiss symptoms and see your GP or MS nurse! When I noticed the issues with my bladder, I was reluctant to seek medical assistance and told my Mum that it could wait until the Monday. Luckily for me, Mum can be a worrier and reminded me that any infection would impact my MS and that the sooner I took medication, the better. Don’t be stubborn like me and accept sometimes you need to speak up and get help!
  13. If you’re feeling alone or down, reach out to your family or friends. It is good to have company, even if that is a friend visiting for a cup of tea, or a telephone conversation with a relative. They will often take your mind off how awful you feel and will provide some much needed TLC!
  14. Pyjamas are your new wardrobe and that is fine! I own an unhealthy amount of pjs, which are in daily circulation when I am unwell. You’re going to be spending a lot of time in bed and the more comfortable you are the better!
  15. I am still not feeling 100% over this episode, but some progress is being made for sure. As of Monday l hope to be returning to work on a ‘phased return’. This means I can return to work on a part time basis, to help me pace myself and get back into working as normal. I can also request to work from home, if I need to rest in-between my working day. If you are in a similar position, speak to your GP and your employer to see if this is a possibility. It can often be overwhelming to return to full time hours and this can be such a great help.

If you have any tips for getting over a relapse, please let me know in the comments!

I also should mention that I have some incredible friends. One of my best friend’s, Mel, is walking 100km from London to Brighton next weekend to help raise money to find a cure for MS! If you can spare any money, please dig deep and donate to her by clicking here. Every penny counts 🙂

Advertisements