Journey to diagnosis..

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At the request of many people who have asked, here is how I was diagnosed with Multiple Sclerosis:

‘I just wish I knew why I kept having my moments of feeling strange, it’s affecting everything I am trying to achieve or enjoy. It is turning me into a different person.’ (26 Aug 2011|11:18pm)

Taken from an online journal I used to write when I was younger. Back then, I couldn’t put into words how I was feeling; now I know it was because I was trying to battle an invisible illness.

I went to and from my GP on numerous occasions from 2008 onwards trying to explain how I was feeling, because I knew something was not right and I was desperate for help. They decided I was depressed, stressed, a student who drunk too much/didn’t sleep enough and that I was agoraphobic. I attended numerous counselling and CBT sessions, took different medication from diazepam to prozac with no positive outcomes or solutions. I got so angry that no-one was taking me seriously, but equally frustrated that I wasn’t able to explain the way I was feeling.

I remember being in my final year of University where I studied photography. I was trying to concentrate in a lecture but I couldn’t take in any information due to such severe brain fog. I got so upset and stressed out I walked out crying. As I’d been told it was due to stress, I didn’t think anything of it.

I used to work 12 hour shifts as a waitress in a hotel, so when I had spasms in my body, I put it down to not resting enough. It was only when I transferred to the reception team working regular hours, that I realised that I still felt just as awful and something was not right.

It was at that point, that I knew I needed to keep on asking for an answer in order for me to get the help I so desperately needed.

I booked an appointment with my local surgery who fitted me in on a same day appointment basis. I explained to the doctor everything that had been going on. How I was frightened to go to the big shopping centre nearby incase I fell over, how I couldn’t concentrate on anything and how fatigued I would be after just 1 hour of being at work. The doctor I saw was very stern and was obviously quite hacked off that the surgery had booked me in on a same day ’emergency appointment’. After being persistent with trying to explain my symptoms in any way I could, she eventually admitted that maybe she should send me off for further testing at the hospital.

I had blood tests, EEG and Evoked Potential studies, which all shed very little light on what was going on with my body. I then got put forward to have an MRI scan which I was petrified about. I wasn’t keen on enclosed spaces and my body did not like keeping still with random muscle spasms. Luckily the radiographer was lovely and could communicate with me through a microphone and headphones that they gave me before I entered the machine.

Whilst lying in the tube with what I can only describe as a space helmet on my head, I could see the radiographer in the mirror looking at the scans with a consultant. He then announced on his microphone that he wanted to inject me with intravenous dye, so that he could see my scans clearer. My heart sunk as I knew he had seen something on my brain scan that was not normal. As with all test results, I had the dreaded waiting game to deal with.

My consultant brought me back into clinic to discuss the findings. He showed me my brain scan which didn’t mean much to me (I didn’t know how it was meant to look in the first place apart from squiggly!). He said that he found it surprising as I did not present with usual symptoms of Multiple Sclerosis, but the scan result was typical of somebody with MS. ‘But you don’t have to worry about that as I don’t believe you have MS, it would completely turn your life upside down!’. Those words will stay with me forever.

In order for me to get this 100% confirmed, I had to go for a day session at the hospital to have a lumbar puncture test. My Mum and Step Dad came with me to make sure everything went smoothly. The procedure consists of a needle being inserted into your spinal chord and fluid is taken out for examination and testing. They will look for evidence of conditions that affect your brain or spinal chord with the fluid taken. I had mine done by the assistance of X Ray. For this procedure, you are asked to lay in the foetal position whilst they take the sample. Unluckily for me I was facing the X Ray screen, so seeing a needle enter my back was pretty scary. I didn’t experience any pain during the procedure, but afterwards I was extremely delicate and I wasn’t able to stand up for long periods of time without feeling dizzy and off balance. The headaches I experienced were also unbearable. I was signed off work for a week and ordered to stay as flat as I could, to prevent any fluid leaking from the area that was tested.

After one week of being signed off work, I was bored senseless but still not well enough to return to work. I rang my consultant to see if there was anything that I could do to speed up the recovery. My consultant said that he would write me another sick note as resting was the only thing to make it better, but he also wanted me to come to clinic as he had my lumbar puncture results back. That feeling returned, my heart sinking. I knew something wasn’t right.

My Mum and Stepdad were in New York, so I called my Aunt and Uncle to see if they would accompany me to the appointment which they were more than happy to do. Looking back, I was so happy to have them both there as I did not take in a single word of what was said. The whole day is a blur, but luckily they both paid attention to everything my consultant said and even called my Mum in America to tell her the news. I didn’t know what MS was, I didn’t know what that meant for me and I didn’t understand why my family were so upset.

Even though MS had been mentioned before, this was the last diagnosis I was expecting and the consultant wasn’t shy in hiding the fact that he, himself – was also not expecting that outcome.

The diagnosis stage made me feel very much in limbo, as I waited from around February until August until I was put forward for any kind of medication. I had so many questions, that I spent the majority of my time using the MS Society forums, googling words and phrases associated to MS; anything at all, to find out more information.

From there, I was put in touch with a specialist MS nurse who continues to support me whenever I need it. I also was sent to Disease Modifying Drug session to decide what medication I would start using as my first line treatment. I now have yearly check ups with my MS consultant, as well as 6 monthly phone and face to face consultations with my injection nurse.

So this was the beginning of my journey..the one that supposedly turned my life upside down. Yes it was a shock, but I am the same person I was the day before I had a name attached to my ‘strange’ feelings.

Bella

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Trying to explain to someone how MS or any invisible illness makes you feel, can seem like an impossible task. Especially when people around you cannot physically see that you need help or just need a day of rest.

This weekend I’ve suffered with numb fingertips in my right hand, double vision and spasms in my back. Although not a very severe flare up, it has made me feel totally wiped and I’ve had to restrict and adapt my plans for the weekend to make sure I don’t over do it and make myself worse. The girls I live with are completely understanding if I have to cancel plans and will always help me if I need it. They have been through the journey of my diagnosis with me so have learnt about MS at the same time that I did.

As you may have noticed, I have no qualms with talking or expressing my feelings! However, trying to describe my feelings and symptoms to people I don’t know can sometimes be a challenge.

‘The Spoon Theory’ is one very good way of trying to explain to someone how you feel when it’s not visibly noticeable. I would definitely recommend reading it and sharing with friends or family if you are finding it difficult to describe your symptoms.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Giving your MS an alternative identity can also be a good way to make your symptoms become separate from you as a person. The below link details the book Jo Johnson has
written which does just that. It was my Mum that found this information,
which may just be one of the most useful tools I have found to cope with my MS. We decided together to call my MS symptoms ‘Bella’ (aka Bella the MS bitch). If I’m stressed out, Mum will always say ‘don’t let it get to you, you know it’s only going to aggravate Bella!’. We try to prevent Bella from making an appearance in my life as much as possible!

http://www.mstrust.org.uk/interactive/mstrust/tag/jo-johnson/

Getting an MS card to carry around is very useful to make sure that in any situation, you can get help if you need it. You can order one of these from the MS Society website and I go nowhere without it in my purse! I find it a quick and easy way of explaining my MS without having to reel off every symptom in the book!

http://www.mssociety.org.uk/ms-resources/ms-assistance-card

What do you use to describe your symptoms? If there are any other good ones you have, please share! ☺️

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.