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 🙂

Feeling older than my years

‘So.. what do you think?’ Mum asked. ‘Not very comfortable and I find myself thinking about every step that I’m taking!’ I reply. Nope we weren’t discussing a new pair of beautiful high heel shoes, but the new addition to my handbag. My walking stick.

You may have read in my previous blog post, that my walking was affected as a result of my last relapse. Physio has improved my strength for the most part, but there are occasions where I feel very weak and recently I have experienced tremors in my legs. Sometimes it feels like I am walking on ice and my legs will just give way, which frightens me and causes me to have quite bad anxiety.

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I was recently in the Laines with my friends in Brighton and I could feel my legs becoming weak. I found it difficult to keep up in the crowds of people doing their Sunday shopping and I had to continuously stop to steady myself or link arms with my friends for balance. By the time we had made it to our favourite breakfast stop, my fatigue was at one of the worst levels I can ever recall. It’s difficult to explain how awful it makes you feel. It was as if I had been wide awake on a flight to Australia, then taken part in a marathon through mud and to top it off having to write a dissertation. My brain fog and energy levels were very low, my legs felt like jelly. This in turn caused me to have a panic attack in an environment that I had visited previously with no issues. Needless to say, we had to pay for a taxi home and I went straight back to bed feeling awful and defeated.

Since I have moved back home, I am under a new MS nurse and we started unravelling my MS story from start to present at my recent home visit. Nadine had to cover all issues from head to toe and I brought up my concerns about my walking. She suggested that I get a walking stick. A walking stick at 25 years old?! You’ve got to be kidding me! Nadine said that just having a collapsible stick in my handbag, may improve my confidence on days where I feel like a wobbly worrier. I sometimes use a large umbrella as a leaning post. If I’m using an umbrella, no-one will judge or look at me differently for walking around with it. I was reluctant about owning a walking stick but decided that if it can help me, I was in no position to frown upon this idea.

Onto the Internet I went, to see what was available. The first links that were listed were sticks that reminded me of old age pensioners, definitely not my cup of tea! Lots of people on the MS group that I’m part of, frequently post pictures of their walking sticks. All of them colourful and decorated, so I persisted with my search. Eventually I stumbled across a funky polka dot one, collapsible and adjustable. Yep, I’m spending my hard earned cash on a walking stick – what is life!

I usually love getting post with my name on it, but this parcel was not one that I was happy to open. I got it out of it’s plastic packaging and connected all of the parts to make it into a walking stick. I stood it up next to my side and looked down at it in disgust. ‘I look like an old person and I look ridiculous’ I thought to myself. I was so angry and I felt as though Bella had taken away my youth. How will people look at me when they see me with a stick?

The stick spent a long time leant against the sofa not in use. Why would I want to use it? Why have I spent money on a stick? I don’t really need one do I? I was in a bit of a mood with it to be perfectly honest. I don’t see any of my other friends walking around with walking sticks!

My mum could sense that I wasn’t happy about the stick and she wasn’t thrilled either. In all honesty she was very upset about me having to accept the fact that I may have to use it from time to time. She suggested that a trial run in a supermarket with her may give me more confidence. I was nervous that I would look stupid and that people would judge me. As mum said, whoever decides to make uneducated opinions isn’t worth paying attention to. Much to my surprise, I got no negative comments. If anything, people didn’t bash into me when they were rushing around!

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In a way, it’s good to have something visible to show that I have difficulty with my walking because from looking at me, I do look like a healthy young person. It’s not an accessory that I’m thrilled to pack in my handbag on trips out, but it’s nice to have it if I’m ever struggling. I don’t use it daily but if you see me using it, I’m probably just having a wobbly day. If you are having a giggle at my expense, I may just give you a prod with the stick – so watch out! If you give up your seat on a train or bus when I am using my stick, I am forever grateful to you. I am still not brave enough to ask to have a seat when public transport is busy, even with a walking stick and my priority seat card. To the man on the train up to London who gave up his make shift seat in the baggage area for me when no seats were free in rush hour, it meant the absolute world to me.

In contrast to this, last month I raised £377.50 for the MS Society when I took part in the Brighton 5K Colour Run. I was so nervous that Bella would give me the third degree and that I wouldn’t be able to survive it. I’m so happy to say that I completed it! I did struggle and I did have to stop on various points of the course, but I ran as best as I could and I was so happy to be doing it for such a worthwhile cause. Thank you to anyone who donated to me!

Walking sticks vs 5K runs only goes to show how each day can vary with MS. Each day is different and I never know how I will be when I wake up in the morning.

 

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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..