Work it harder, make it stronger

After my most recent relapse, my walking and balance was very badly affected. I had very tingly feet and as a result gained what I called a gangster limp. My left side was very weak and I had electric shock sensations going from the back of my knee to my lower back. Part of my treatment was taking oral steroids for a course of 5 days and I was also referred for Neuro Physio at the local health centre by my MS nurse.

This is the 2nd time that I’ve had physio sessions here, so I had an idea of what I could expect. However I was a lot weaker this time and I was worried that I would be stuck with the limp as long term damage as a result my relapse.

At my first appointment, I was on my last few days of steroids, so I inevitably felt rubbish anyway. Steroids can leave you feeling really weak and fatigued; although they can help in the long run. With this I found any exercises physically very challenging and I was worried that I wouldn’t be able to do much at all.

My physiotherapist Katy, was very kind and could tell that I was struggling. Our first session together was mainly spent discussing what my relapse had caused physically and what I wanted to work on in my sessions. My main focus was for my walking to improve and for my confidence to be restored. I was worried about having falls with my weakness being the way it was. I also wanted to get back to running again, as well as for my vertigo to improve.

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She did a few strength tests to see where my weaknesses were and it became clear very quickly that my left side had been damaged by my relapse which is why I was experiencing the tingling and limping. She timed how quickly I could walk from one end of the room to the other. Even this made me feel nervous that I would trip and fall over. To start with, she gave me a sheet of gentle exercises to practise at home. The first thing she wanted me to tackle, was to improve my core strength to help with all aspects of my recovery. I did exercises such as bridging and pelvic tilts to start with.

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I wasn’t sure that there was anything that could be done for my vertigo and balance issues. I do take tablets regularly to keep my vertigo as normal as it can be, but with this relapse it had significantly worsened. She advised that there was some exercises that could train my eyes and brain to work together as again; the signals from my brain had been getting muddled and confused because of my relapse.

Katy advised me to try something called Cawthorne-Cooksey exercises. These involve things such as looking from left to right, moving your head left to right and picking things up from the floor whilst sitting down. Sounds simple right? Not when you feel like you are already on a roundabout! At first I struggled with a lot of them and they made me feel very weird, almost to the point of feeling nauseous. After time though, this improved and I would recommend giving it a go if you are experiencing similar symptoms.

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After a few sessions of gentle strengthening exercises and CC exercises, I then spent the rest of my sessions in the rehab gym. As well as Katy, I also worked with Simon a student doing work experience for physiotherapy. Just like Katy, he was encouraging and friendly and helped me so much. My first sessions at the rehab gym were mainly based on the plinth working on my core and balance exercises to make sure that I was as strong as possible. I even went back on a treadmill to see how my walking was looking. For a long time, I couldn’t go onto the treadmill without gripping onto the handrails for dear life. The treadmill wasn’t even set to a running pace, just a gentle walk but I could still feel my left side being more slanted and wonky; it was even physically visible to the physiotherapists!

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Floor work I found to be really helpful, especially the happy and sad cat! Sounds completely nuts, but I found this the easiest way for me to tune into my core and be aware of how to balance myself; something that I struggled with in the beginning of my recovery. This was also an exercise that I used a lot the first time I went to the physio sessions in 2014. I also used exercise balls and ankle weights which I only had access to use at the gym, though I do intend on buying a set of these because again; I found these so beneficial.

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The more I grew in confidence, the more challenging my exercises became. I was given what I felt was my ultimate challenge – the wobble board. Now these aren’t easy at the best of times, let alone when you are having to throw a ball to and from the physio. My body had to get used to coordination and balance all at the same time.image1For my lower limb strength, I was given Therabands which were strapped to my ankle and a support.  These are designed to test resistance – they are like a big elastic bands colour coded for different levels of resistance and used by pulling your limb away from the point they are tethered and then maintaining resistance as you move it back. I started off on yellow and eventually progressed to red and green. I had my own bands that I could use to practise with at home and these are tied to the end of my bed posts. They are quite hard to ignore before I go to bed, so I tend to use these quite frequently.

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At the end of each session I would use the exercise bike to spin out any tension in my legs on a low level and also got advice about stretching my tired tight muscles

As the weeks went by, I found that I was pushing myself harder to do the exercises for longer periods or doing more within my sessions in general. As I did my physio before work when I had returned to work again, both Katy and Simon were very aware that they did not want to tire me out as I was becoming a lot more fatigued. They were really good at knowing my limits and adapting my routine if I was feeling particularly worse one day. Many of my sessions were hard as I was also coping with work stress and this noticeably affected my recovery as they both said that I was visibly shaky and this definitely slowed me down.

Once things had settled down we went back to everything at full speed and I was happy that I was being pushed with things such as the mini assault course that we used to do. Jumping, hopping, skipping, walking on tiptoes, bounding, running and going up and down stairs; made me feel like I was making huge steps in my recovery. I was even able to go on my first run through the common for the first time in forever. This for me was massive and I am still so proud as to how far I’ve come. The physio’s even saw a difference when I was able to go onto the treadmill without holding on and I was so chuffed!

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I would highly recommend neuro physio if you are experiencing similar problems to me. I have found it to be so beneficial and I can see such an improvement in my confidence and strength which were the main areas that I wanted to work on. Contact your GP or MS nurse to see if this is available in your area 🙂

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Needle in a haystack

You have been battling unknown symptoms and strange feelings for what feels like forever. You’ve seen various health professionals for their opinions and for testing. At last, you have a diagnosis and you start to feel like there is light at the end of the tunnel. We live in a world where with every problem, we want to find that one simple solution to fix it. With MS, this can be easier said than done. As of yet, there is no cure for Multiple Sclerosis; although scientific studies are being carried out to try and come closer to doing just this. However depending on the stage of your MS, there will be various treatment options available to you.I was desperate to start treatment as soon as possible after my diagnosis. Anything to try and alleviate the feelings and pain that I was experiencing. It can be a lengthy wait before being put forward for any sort of treatment, so when you are having to wait; make sure you research the different options available to you.

What is a DMD?

Disease Modifying Drugs (or DMD’s as they are more commonly known), are used to try to reduce the number of relapses experienced and can slow down the rate of disability. They can be taken in various ways from injections at home, intravenous treatment at the hospital or tablets on a regular basis. For some people they can get started on one of the DMD’s and find that their symptoms massively improve and they experience more remissions than relapses. For others it can be a teething process, to find the right treatment that suits the individual the best. Deciding on what treatment to start when you are first diagnosed with MS can be a daunting prospect, no matter on how desperate you are to start! It is so important to choose the best medication for your own personal circumstances.

How did I decide?

One of the first sites I came across was weighing it all up. This gave me a vast amount of information and advice on what to consider when deciding what medication to begin with. I would strongly recommend having a read if you are torn between which DMD to take.

In Southampton, I was referred to a DMD day session at the general hospital. This was an opportunity to meet other people with MS who were also being put forward for treatment. On the day there was industry nurses and MS specialists giving talks on each DMD to give an understanding as to what to expect with each one.

I was counting down the days until I could start on any treatment possible. In my head I convinced myself that once I started on a treatment, that would be my wobbly days over. I guess I put to the back of my mind, the fact that MS doesn’t have a cure.

I went with my mum and once we arrived at the session, I found myself becoming upset as I saw people much older than me with MS and people experiencing relapses at the time. I will admit that I definitely freaked out and became very emotional when they were asking around the room how long everyone had been diagnosed with MS for. Surely I was too young to be there? Surely I looked ‘too well’ to have MS? Now I know that these two factors do not have any bearing on who can have MS, as lots of people with MS are also young and also look ‘well’.


There was a table spread with various different treatment options; as well as sponges to act as fake skin for us to practise using without having to inject ourselves. There were many names of drugs that I recognised such as avonex, betaferon, rebif, copaxone and many more. Each one carries different side effects when taken. They also vary in terms of how frequently you need to take the medication. My mum and I, had lengthy discussions about what DMD would be the best one to start on, before we arrived at the session. For me, I felt that having a treatment with less side effects was going to be the best option. Having to administer injections didn’t faze me, as I’m not frightened of needles. For others, it may be the case of choosing an injection that you have to take less often, if they are unhappy about needles. Copaxone is an injection that you take once a day in areas such as your thighs, stomach, hips and arms. It is one of the medications for MS that doesn’t come with an array of side effects. Things such as flu like symptoms are very common on the other options available. With this in mind, we whittled it down to Copaxone as being the DMD I would opt for.

There was a young lady sat on my left with her Dad and friend who was also considering taking Copaxone. Her reason was that it would not interact with the medication she was currently taking to help other symptoms that MS was throwing at her. She also seemed just as freaked out as I was originally with being at this session, which made me feel more relaxed that I wasn’t in this alone.

After the session, I contacted the industry nurse that was at the session and asked to give the lady my contact details. Her name is Lisa and we ended up starting Copaxone on the same day. On the lead up to our first session with the injection nurses, we had various phone calls to discuss our fears and thoughts on everything. She is ambitious, courageous and lives life to the full. Just the person I needed to have around at this time! She had her appointment first and once she was finished up, I received a phone call with a full run down on what to expect when the nurses turned up to my house. To my surprise, the nurses showed up with a bunch of sunflowers that Lisa had sent to wish me luck for my first dose. She is truly remarkable and I feel so happy that I reached out to her.


Injecting myself

The first session with the nurses was so nerve racking. The idea of injecting myself previously didn’t worry me, but when sat with two nurses and an auto inject for the medication; it dawned on me that there was no longer sponges to practise on. I was the human pin cushion and I would not have nurses with me the next day to help me. I was armed with leaflets, injection journals and equipment to carry out the rest of the injections by myself.

It’s strange now looking back on when I first started to inject. It’s become such a normality to my daily routine that I barely flinch when I do it now. Mum even laughs at me and says that I could probably do it with my eyes shut because I’m such an expert! I must admit, I’m still not brave enough to inject myself without my auto inject. I’ve only had to do it once without the auto inject when I forgot it on a night out in Brighton. Luckily, one of my best friend’s Bobby stepped up to help jab me! I guess it’s not even all that bad, I probably just need to toughen up and give it a go for myself!

The only real issue I have experienced with Copaxone is the tight chest feeling after some injections which only lasts around 20 minutes and injection site reactions which can be itchy and sometimes leave lumps. In the grand scheme of things, neither of these are too hard to deal with. However when you have been told that your medication is no longer working and you potentially have active MS, you begin to wonder why you are still giving yourself lumps and bumps daily.


What now?

After my most recent relapse my MS nurse Hazel, wrote to my consultant to update him on my most recent symptoms. She mentioned that my treatment potentially needed to be escalated to a different DMD to prevent the amount of relapses I was experiencing. I went to my consultants clinic with my best friend Mel as a support for me. I have kept a very close track of symptoms over the last 6 months and for the most part; I felt that half of the times that I was really fatigued or suffered from numbness and sickness, that it wasn’t MS related. With my consultant looking in greater detail at all the evidence I had brought to the table, he advised that it was clear that I have had more inflammatory episodes than the most recent relapse. With this, it meant another MRI to see what disease activity is affecting my brain and spinal chord. Once he has the results back, this will determine what medication I will be escalated to. The two so far we have been advised of is Tysabri and Fingolimod. Both of these come with high risk side affects in some cases and with either, I will be closely monitored by health professionals to make sure that I am still healthy.

I had my MRI a couple of days ago at the hospital on my brain and spinal chord in a very fetching outfit! I had half of the scans done with contrast dye injected by a cannula and the other half without. This was to see in clearer detail the lumps and bumps in my brain and to see exactly what was going on. This is the 3rd MRI i’ve had now and I have to say I do struggle to keep still and not fidget. I also don’t like being in tight confined spaces for too long. The whole experience was made a lot more bearable when the radiologist said that they could play Beyonce through the ear defenders for the whole scan so that I had something else to listen to besides the loud clanking and whizzing sounds of the machine. “Amazing, that will make me feel much calmer, thank you!” I said. More like ‘I will struggle to keep my feet still and I can’t promise that I won’t sing along’ I thought to myself!

 Now the waiting game is back, ever so slightly in MS limbo land yet again. Back to the waiting room of the unknown. Awaiting the next step in my MaSsive Journey. Whilst awaiting the switch from my current MS DMD to a more effective treatment, I am still having to use Copaxone daily. I am finding myself getting increasingly impatient, as I know full well that Copaxone isn’t working for me. I guess I am impatient but also getting frustrated of feeling that my life is one huge relapse. To be in full remission would be a dream at the moment!

Which one will be my new treatment and what will my scans show? Now we have to watch this space..

Falling head over heels and not over your own feet..


You know that you’re going to have a great Monday when you fall over your own feet before you have even reached the office. Yes… I did just that last week! Mortified would be an understatement, but I had to laugh when I dusted myself off and carried on walking. It’s not just MSers that fall over in life. Everyone has the ability to lose balance; just us warriors more so than most!

Losing full feeling in my feet has set me back a few steps (quite literally!) and I have been feeling pretty irritated that I’m not donning my nicest heels on a night out at the moment. At least I’m not having to carry my shoes home after an evening of Beyoncé dancing!

That thought brings me nicely to a subject I’ve been contemplating writing about for a while. In the same way that everyone has the ability to fall over, we can all experience heartbreak. But does having MS or an invisible illness make this any more difficult?

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Looking for Mr Right can feel like a challenge at the best of times. Awkward first dates, first impressions and spending hours rummaging through your wardrobe for the perfect outfit. Putting your trust and feelings in someone else’s hands can be really daunting and as they say; you have to kiss a lot of frogs before you find your prince.

Now imagine this anticipation knowing that you are holding something back. I have always been a firm believer that my MS does not define me as an individual, but equally I have to accept that as much as it is an inconvenience for me; the moment I share my life with another person, they may also have to bear the brunt of Bella’s outbursts. If you are new to reading my blogs, click here to read about who Bella is.

I was in a long term relationship when I was first diagnosed, so finding out that I had this long term condition meant that my boyfriend and I both started to research how this could affect our future. There were times when I found it challenging to open up about what my future would hold for me. It pushed me further away emotionally, as I felt confused and scared. As we were in a long distance relationship, not being able to discuss my emotions face to face for fear of losing him; probably caused us both to feel more distant than we actually were. I couldn’t stop thinking about everything that may or may not happen to me that could cause us to break up. I also didn’t want to be constantly whinging about it, it’s not exactly the most cheery of topics! Luckily at the time Tom and I were together, he read up on all aspects of MS and in general was so supportive to me through some of the really tough times. Although we parted ways, we still remain friends and have no hard feelings towards each other.

I think it’s safe to say that all relationships that last and that are worth the fight; are based on chemistry and true love. Of course, feelings can change over time and life may push you into different directions to what you expect.  I do believe though that if your crush/love interest (or even friend) can’t see past your invisible illness, then they are not worth your time. Although I can preach about people not being worth having if they can’t see past your health, sometimes when your health is all you feel like you are contending with; it can definitely be a challenge. It still terrifies me opening up to someone new about having MS. I always find myself blurting out to anyone I meet that I have MS, as if I have to give them a heads up or a warning as to what they may expect hanging out with me.

If I meet someone and tell them it sounds like I am in an AA meeting ‘Hi my name’s Rachel and I have MS!. Equally acting oblivious to everything and not being open in discussing it, could be viewed as being deceitful; as if it’s a horrible secret I have to hide. The truth is yes, it can be a pain in the ass! You may have to adapt the way you do things, but you can still experience long and happy relationships with MS.

The real question is when do you tell someone? Should you tell them before you’ve even met them? Does it even matter? Maybe they should get to know me before they get to know Bella too? I always think that the moment someone sees me having a bad day with symptoms that they will do a runner. That if someone turns around and says that they are no longer interested; it must be because of my MS.

I have to remember that there is more to me than my health and maybe that person is not Mr Right or Mr Right now. I definitely experienced my fair share of heartbreaks before MS was in the picture! I just hope I would never even be attracted to someone that would leave me just because of having MS. I’d like to think I have better taste and go for nice genuine guys.

I honestly don’t think there’s a right or wrong answer in when you tell someone about your MS or invisible illness. You may want to make the person aware so that if you are having a funny moment and need to recuperate; you can be honest and not have to pretend that everything is ok. Some people may have pre conceived ideas on what your condition means and may have the complete wrong end of the stick. Setting them straight on how you cope, may make them understand better how to help you. On the other hand, you shouldn’t have to be judged before you’ve even had the chance to sell yourself.

Be confident, be yourself and warrior on. You never know, one day someone may put an R between the M and the S.