Forget me not..

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So after clinging onto the tables and chairs at work to get around the office without falling and having the worst double vision, I realised today that I had forgotten to take some of my daily medication.

My brain fog recently has been awful, to the point where I often think I’ve totally lost the plot. I go to write notes to remind me of something I need to do later and I’ve forgotten to write it within a few seconds of thinking about it. I even had a dementia test when I went to the GP last! I didn’t even realise that bad memory was a symptom of MS.

From vertigo meds, vitamin D tablets(a must have for MS Warriors!) and my Copaxone jabs; these are just some of the cocktail of medication I have to make sure I take daily.

I guess it’s totally normal to forget things every so often. Forgetting to take my lunch to work or forgetting to put on my false eyelashes for a night out I can deal with; but forgetting my medication can not only affect my symptoms in the short term but also in the long term.

I have a few tools to help me remember though which have been really helpful and I would definitely recommend.

MS Journal App

If like me you have to do injections of DMDs, this app will not only notify you when you need to do your injection; but it will also tell you which part of your body you need to inject in order to carry on rotating your injection sites safely. It will also notify you when you need to order more medication before you run out.

Pill pot

A simple pill organiser pot from Monday to Sunday is not only cheap to purchase, but very useful to make sure you have taken all the meds you need to. It saves me from faffing around hunting for all of my medication and also saves me from carrying lots of packets and pots when I travel.

Work reminders

Some medication I have to take throughout the day whilst I’m at work. The best way for me to remember is to set calendar alarm reminders on my email client to go off at lunchtime every day. I also tend to ask my colleagues to remind me as they tend to look out for me as well!

What methods do you use to make sure you keep on top of your medication routine?

Pace yourself

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Sometimes having a good day doesn’t mean that you have to do everything on your to do list. It doesn’t mean you have to go on a mad 24 hour bender wearing the highest heels you own. It doesn’t mean that you have to go for a 10k run and spend 2 hours at the gym doing weights. The one thing I’ve learnt is that having a good day, doesn’t mean that you are cured.

Now this may sound really negative; if you’re feeling good – why not do things you haven’t been able to do?! I am not saying you shouldn’t, however; it is about learning what your limits are.

One thing that I am still learning to perfect properly, is to pace myself. Although I may be having a good day and feeling super positive about tomorrow, I have to remember that my MS can flare up at any time. Small steps are the best ones for me to take and I can’t beat myself up for taking it easy. Maybe if I carry on feeling good this week, I can do a good gym work out when I don’t have work the next day. If I feel good tomorrow then maybe I can make a proper dinner that didn’t come out of the freezer. I could even then freeze extra portions for when I’m having a wobbly day.

Unfortunately having a chronic illness requires a lot of extra planning which I think is slightly cruel sometimes. Yeah, I have lesions (or cauliflowers as me and my mum call them!) all over my brain but let’s use my brain lots to get over my next potential bump! I can laugh about it but i guess it’s lucky I inherited my mums organised genes to make my life feel more simple.

I also know that today was a dramatically better day than how I’ve felt in comparison to last week; however this does not make today a perfect day! This does not mean that I didn’t end up throwing my onions at someone when I was using self check out and my hands went all wonky! It certainly doesn’t mean that my body wasn’t shaking when I was waiting in the post office queue to post my eBay parcels.

Sometimes you have to take the good with the bad and remember pacing yourself and also praising yourself for making a baby step in feeling positive, is a massive step in the right direction. Haha you would think I’ve made a scientific discovery or just landed on the moon! I guess this is the life of a worrier who is making every effort to be a warrior.

So tonight, this means an early shower, a simple dinner and an early bed time. Let’s carry on making this week a good one. Happy Monday!

My story

Rachel (AKA Grimdawgg), 24, writer of Warrior vs Warrior
Rachel (AKA Grimdawgg), 24, writer of Warrior vs Warrior

On the 7th of February 2013, I got the proof that I was struggling and there was a reason behind it. I had been given the news that I had Remitting Relapsing Multiple Sclerosis, a neurological disease affecting the spinal cord and brain where the nervous system attacks itself. My family took the news hard and were all really worried about what the future would bring for me; whereas I was initially happy that I finally had a diagnosis and something to connect my daily symptoms to. However, I won’t deny that I had (and still am having) tough days and have at times found it hard to cope emotionally and physically.

Although I am a positive individual, I do have days where I break down and wonder why I have to live with such a crap disease (being constantly fatigued, forgetting things with brain fog and having wobbly limbs and eyesight to name but a few!). I get frustrated when people who aren’t affected by anything medically can throw their life away and not grab life by the balls, when I am sat at home reserving my energy and working hard to stay independent. I want to scream at people when they say the usual quote (invisible illness sufferers, I know you’ve heard this one!) ‘But you look so well!’. If people had a better understanding into invisible illnesses, maybe it wouldn’t be such a shock that people can still look attractive whilst feeling in pain.

I decided if I couldn’t change my future with my diagnosis, there was no point in me being sat worried about the future for myself. Nobody truly knows what is around the corner and I do not believe there is any point in being concerned about what may, or may not happen to you. You need to live for now as best as you can and look after your mind and body.

My amazing mother got very emotional and worried for a long time at the start of my diagnosis. You could often not speak to her without her breaking down and feeling helpless. I sometimes had to give her a talking to and tell her to quit being a worrier. Life had thrown a spanner in the works and it was up to me to find a way around it to make my life as normal as possible. I wanted to be a warrior and fight off anything that stood in my way.

All of these thoughts made me decide to start a blog, to document the days where I was feeling like a worrier and other days where I felt more like a warrior. I hope that in time, people can connect with each other to share their stories and to help each other through their struggles. I am not by any means saying that I never worry and I am always brave. There is nothing wrong with having a bad day, but it is about how you turn that around to be more positive. Pick up tips from other people who also have had crap days and what they did to pick themselves up.

I believe the stigma of support should not only be restricted to people who are in a wheelchair, use a stick or have other aids to help with day to day life that is visible. There is nothing braver than accepting that you need a hand, a friend – some advice; even when you may ‘look normal’.

This modern world should be about supporting others as well as yourself in any circumstance. If I can share worries, basic knowledge, tips and tricks and understanding of invisible illnesses’ with other people, maybe other sufferers can do the same and we can all move forward as warriors.