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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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.