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.

Catch me when I fall

Having found this video on a group that I am a member of for women with MS, words cannot begin to describe how much admiration I have for this brave young girl. To see someone have such a strong passion for something, where they are determined not to let the MonSter control their life is beyond fantastic. It is also so inspiring to see Kayla’s coach provide so much support and encouragement to what she does.

Just because you have a disability, this should not define whether or not you can achieve your goals and Kayla is a perfect example of this. Stephanie Millward is another athlete who does not let MS get the better of her and she is a swimmer for the Paralympic games.

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Yes both Stephanie and Kayla look like normal and healthy young women to the naked eye, but they are also fighting the unfortunately all too common battle of invisible illnesses. Despite this, they have both achieved so much and prove that nothing is impossible with the right drive and determination. They may have to adapt the way they train or even compete at different levels, but they still give absolutely everything they have into their passion. If you have the right support around you, anything is possible and you should never give up.

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Have you achieved goals you didn’t think were possible? Who inspires you? Let me know in the comments 🙂

Relapsing with a gangster limp

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‘Ouch, that really hurts!’ I whinged to my Mum on the phone whilst walking home from work. After a good appraisal with my new team leader at work, I was calling home to have a catch up on everything that had been going on. However, I couldn’t ignore the electric shock sensations going through my left leg, as I was crossing the road and the pain it was causing me. My mum and I, hadn’t put it down to anything in particular apart from maybe being sat awkwardly at work and I felt personally that it was a sign that I had been pretty slack with my fitness as of recent!

When old symptoms returned on a lower level over the last few weeks, I didn’t think much off it and just decided to shake it off and carry on. For instance, the MS hug decided to be not so romantic and instead crippled me when I was trying to focus on my work. This wasn’t as intense as when I first had it and I didn’t think too much of it. Over the course of 3 weeks, more symptoms were appearing and when it got to the point that my left leg was getting painful shock sensations and numbness; it was time to contact my MS nurse and see what was going on.

By this point, the symptoms were affecting my daily activities on a much larger level. The numbness in my leg had progressed to what I call, a ‘gangster style’ limp and my cognitive thinking and vision was beyond awful. I couldn’t read what I was doing at work and I couldn’t problem solve either. My MS nurse organised for a home visit the following day and for me to see the GP on a same day appointment to see what was going on. After carrying out neurological exams on my legs and vision, he advised that this would be deemed as a relapse in my MS. I had returning of old symptoms and the presence of new symptoms. Where it had impacted on my walking and general day to day activities, it was advised that I should treat this with high dosage steroids. This is taken as oral medication on a 5 day course and I have been signed off work for 2 weeks, maybe longer depending on recovery time and referred to Neuro Physio to improve my walking.

Recognising whether you are relapsing can be really tricky when you have recently been diagnosed with MS. So what is a relapse and how do you know if you are having one? What should you do and what can help? These are just some questions you may have to find answers to. With MS they say that no two people are the same. Basically that everyone is affected in different ways and not everyone experiences the same symptoms when relapsing or having a flare up in symptoms.

What is a relapse?

This link from The MS Society website gives a pretty clear definition on what a relapse is and how you can determine whether you are having one. As the time frame where symptoms are experienced is so important, this is why documenting the onset of symptoms is really key to help your healthcare professionals assist with treating your relapse in the best way.

Should I treat it?

Now this decision is something that you need to discuss with your MS nurse or GP to decide whether treatment is going to be the best course of action. For me with this relapse, where my Beyonce style limp was causing me difficulty; it was decided that steroids would be best to nip the symptoms in the bud and to stop any residual symptoms. The idea of steroids, is that they reduce the time that your relapse lingers for, as well as speeding up your recovery time and reducing inflammation caused.

Steroids are not very nice medication to take, which is why discussion with health professionals is very important. They can give you horrible mood swings, acne, weight gain, insomnia, heart palpitations and many more nasty side affects. Although the symptoms experienced are usually short term, they can make you feel awful and you need to be aware of this before starting treatment. I am not over exaggerating when I say that all of the possible side affects mentioned in the leaflet with the steroids, I experienced. Weigh up the pros and cons, discuss it with your health professionals and be clued up on what you may encounter.

Tips and Tricks to deal with Relapse

This is the 3rd relapse I have experienced and the 2nd that has been treated with steroids. I think it’s safe to say it can take a few relapses to be fully prepared for what you will have to deal with both physically and emotionally. In Shana’s recent blog on The MS Society website, she talks about making a relapse nest with essential bits to help your recovery.

Taking steroids with jam, can be really helpful to kick the metallic taste you get with the tablets or IV line. This was something my Mum suggested to me on 1st experience with steroids, as I wasn’t able to keep the steroids down without vomitting. Trust me, I will never be on steroids without jam now! Some people find mints/gum or sweets can be helpful too! Make sure you are stocked up on food and essential bits and pieces. Organise an online grocery shop or get a friend or relative to help you.

You should focus on what you can do, rather than what you can’t with any relapse to help your recovery. My concentration and vision was so bad with this relapse, that having audio books and Disney films; was my saviour to stop me from being bored and going insane! I couldn’t focus on anything too complicated or read properly but my hearing was fine. My walking may not have been on point, but my hands and dexterity were playing ball! I may not be a Picasso, but my lovely colouring in book certainly kept me entertained!

Setting goals and targets I found to also be really helpful. It showed me how far my recovery had come. I documented this with photographs and a tick list. When I initially made a to do list, I found every task completely unachievable as I felt drained and fatigued. Day by day, different tasks are getting ticked, no matter how big or small.

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At the start of the relapse, I went to the top of the road to collect my medication from the pharmacy (a trip that would normally take me 5 minutes). It took me a lot longer as my mobility was poor and my balance was very shaky. I wanted to curl up into a ball on the pavement and cry out of hopelessness. In comparison, once the medication had started to do it’s job, I managed to get out of the house to listen to some live music near by. Granted, I had a day ticket to this festival and I barely lasted a few hours. All of my friends were out getting battered and I spent my time sat down not being able to keep up with conversation. Despite this, getting out of the house was a massive achievement in comparison to not being able to make it up the road.

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Relapses can take a while to get over completely and although I have a long way to go until I feel back to my normal self; I have made huge progress and I just hope that this continues!

What tips and tricks do you use to help with your relapses? What would be in your relapse nest? Let me know in the comments 🙂

PS: It is World MS Day today. Have you noticed MS being noticed in the paper, on TV or in social media? The MS Society are campaigning about slow diagnosis and the feeling of being left #InTheDark

Let’s raise awareness with the hashtag and carry on donating!

Have a happy holiday

MS heat

Destination has been agreed, flights have been booked and you are starting to cross off the dates on your calendar. That summer holiday you have been longing for, is only round the corner and you can finally relax.

For any trip away, preparation is key to make sure that you have a stress free time. However, living with a chronic health condition requires much more planning than how much money to get exchanged or how many bikinis to pack – although also very important! 🙂

Climate

Severe increase or decrease in temperatures can be bad news for MS sufferers. This fact sheet from the MS society gives a more in-depth view into the science behind why this happens.

If you are a sun seeker, there are a few simple ways to prevent any negative side effects the heat can have on you. From keeping hydrated by drinking plenty of water, to requesting a fan for your bedroom at night. Have shade breaks in extreme heat or even just a dip in the pool to keep your body temperature down. I personally always find that an afternoon nap can help me recuperate in time for an evening meal or a night on the town! This may seem like basic common sense, but when you are letting go and relaxing; it’s easy to forget the basics. The last thing you want on your break away, is to become fatigued to the point where you can’t even enjoy your holiday!

Medication

Most medication has specific storage instructions and this can be difficult to accommodate in certain situations. For instance, Copaxone (my disease modifying drug) must be stored in the fridge until such time as when you need to administer the medication. Due to the temperature and altitude in the hold on an aircraft, my meds have to be carried in hand luggage and taken through security.

With the new limits and regulations about carrying liquids on flight as hand luggage, a medical letter is required from a health professional. These can be requested from your medication supplier and I make sure I carry this with my passport and boarding pass when going through security. It can be daunting travelling with injections; the first time that I did made me feel like a criminal mastermind and I was convinced security were going to put me in an interrogation room and be difficult on letting me board with my meds. This of course, is nonsense and it is something that airport staff see on a daily basis.

Also don’t forget your travel sharps bin, as taking a one litre bucket for your used medication isn’t very practical! Again, this should be taken on as hand luggage.
When booking accommodation, remember to check out the fridge facilities. Most hotels and hostels will have mini bars in rooms or will be more than happy to keep your medication cool for you.

Help and Support

Keep safe the telephone numbers of your medical support network. MS nurses, GP’s and next of kins can be useful in case of emergency. I store these on my medical ID application on my iPhone, so that these can be accessed by anybody at any time.

Make sure your travel companions are aware of your health condition and how best to assist you if you are having a bad day and need help. My friends are good at telling me to slow down if I am trying to keep up with them and giving me the good advice of taking a break. Aside from this, I struggle to administer my injections in my arms, so having a friend who is happy to help is always useful.

Another must have, is to look into medical insurance for your trip. Paying a small price back home, could save you a small fortune abroad if you have a flare up and need medical assistance. Some pre-existing and chronic health conditions may not be covered under certain insurance policies, so always check before you travel. Get price comparison quotes and find the best cover you can.

What trips have you been on recently? Have you experienced difficulty with travelling with a long-term health condition? Got any tips that have made your travel easier? Let me know in the comments 🙂

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Fundraising Handover

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Ever since my diagnosis of MS in 2013, I had always wanted to give back to the charities that gave me support when I needed it most. After I had got my head around the fact that I had this long term health condition, I wanted to arm myself with as much information as I could.

The MS Society was the first website I came across and it provided me with stacks of knowledge and advice on how to come to terms with everything. The first thing I did, was to order (what felt like a million and one!) information booklets covering everything I needed to know about my diagnosis. Symptoms, treatments, how to recover from relapses; basically anything and everything relating to MS, I ordered copies of. There was so much to find out and although some of the information didn’t relate to me at that present time, I knew that it could one day.

When things got really tough and I needed to talk to someone, I called up their helpline to ramble to a friendly voice. I asked about various treatments, what sort of future I could expect and many other random questions. The lady I spoke to was very friendly and understanding of my fears and put my mind at ease.

Their social forum was and still is, one of the most valuable tools I have found to cope with everday hiccups of living with a chronic condition. When I am unsure about a strange symptom, want some advice on what medication to consider taking or just generally connecting with others in the same position as myself; this is where I always head to.

So when work mentioned in their weekly bulletin, that they were looking for their next charity to support; I knew I had to get involved.

Over the course of 6 months, myself and my team organised various events across our office in order to raise any funds for the charity. I would like to mention that ‘come to work in your onesie day’ should be an every day event! This was just one of the charity days held; along with cake sales, dressing up as ghoulish characters on Halloween and dress down days. In total we managed to raise £550.11 which I was chuffed to pieces with. A special shout out to Barbara and Chris (my Mum’s friends), who also donated money after reading this blog – thank you so much!

I instantly got in touch with the Southampton and District Branch of The MS Society to let them know of our efforts. I organised for Donna and Debbie from the branch, to come to the office so that I could find out more about what they do.

The local branches organise various events and support groups for MS sufferers, as well as friends and families to get involved in. Meet ups, information talks and excersise classes; the branch covers it all. They work hard to fundraise the much needed money in order to run these events, as well as raising awareness for such an important cause. I hope to carry on raising as much money as I can for them in any way possible.

MS in the press

Something that must be said before I ramble on, is that Bella is not being kind to me as of recent (what a bitch!). I have had a few busy weekends in a row which has led to my fatigue being pretty unbearable, along with some random body spasms, rubbish vision and generally feeling off balance and spaced out.
My work colleagues have noticed that I am visibly more wobbly around the office as well, with them joking that they are going to carry me back to my desk after walking to the printer (cheeky buggers!). No point in being a worrier though, I know I just need to relax this weekend which is exactly what I intend on doing! 
With this in mind, please be kind if this post makes no sense whatsoever 🙂 

I thought I would do this post as I have seen Multiple Scleoris mentioned in various forms throughout the last week. I will always remember seeing Multiple Sclerosis mentioned for the first time on TV, when Jack Osbourne appeared in the MS Society Lifeline appeal video on BBC1. It was inspiring to see someone raise awareness for a cause that I could 100 percent relate to in so many ways (he also injects Copaxone as his disease modifying drug daily, just like me!).

I am an avid follower of all MS related press articles, which in turn is helping me learn new information about this disease daily. I also get some strange sense of pride when I have people say things like ‘I saw this programme the other day and the person featured had MS just like you!’. If it is bringing awareness and understanding to others, then to me; this is a step in the right direction on a much larger scale.

With this in mind, here are my top 3 finds this week of media which has kept me feeling positive and feeling like a warrior:

The People’s Strictly for Comic Relief

Episode 1 out of 4 is on tonight at 9pm on BBC1 (I’m sure this will be featured on iPlayer as well if you miss it!) and features Trishna (volunteer from the MS society and MS warrior). Dancing, raising awareness and hopefully bringing in more donations for the MS society from this being broadcast can only be a good thing in my opinion!  

In Pictures: What multiple sclerosis means to me

I saw the link to this article on the Shift.ms twitter page (another great social network for MSers!) and it really caught my attention. Photography was my BA hons degree choice and it has been a long time since graduating in 2011, where I have seen a series of photographs that instantly struck a chord with me. All the photographs were taken by MS sufferers and it is putting a positive twist on a nasty disease. Can’t get more warrior, than that!

Awkward Bitch – My Life with MS

This was the first book I ever read about MS. I remember being in waterstones and browsing the various selection of books surrounding MS and neurological conditions. All I saw was factual and quite frankly boring looking textbooks on the shelves. Then I came across this and I knew this would be completely up my street.
Marlo Donato Parmelee writes honestly about her diagnosis of MS and how it affected her life. Although in parts this book can be quite hard hitting, it is bound to make you laugh and smile as well. I would definitely recommend this is a must have, for MS warriors and their army of friends and family members. When my vision and concentration starts to behave itself again, I’ll be re reading this.

Have you seen your invisible illness mentioned anywhere recently? Have you got any recommendations on similar articles? Maybe we aren’t so invisible anymore..

Working with MS

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Why should anybody have to justify their illness or disability?

I am currently trying to battle exactly this and I will not pretend that it has been an easy ride. Most of my energy in the last month, has been put into trying to express and define my daily struggles in writing in a professional manner. I am left feeling slightly let down that my employer, who was once very accommodating to my needs; has now given me a stage one formal warning for my
absence relating to my MS.

Unfortunately this is not the first time that this has happened to me, the last time ending in a formal dismissal from my workplace. Having just being diagnosed with MS, this may have been one of the biggest challenges I have faced so far in my MS journey. I was in MS limbo land and unemployed; needless to say the stress caused `Bella the MS bitch` to give me grief (brilliant – not!).

The one saving grace with this experience, was that I wouldn`t let the `big dogs` get the best of me ever again. Just because I have this chronic illness, disability, pain in the backside (whatever you want to call it!); this does not define me as a person. I refuse to be bullied out of working or being independent in any situation. If anything, each time it just makes me stronger and in my opinion they have lost out!

Here are some of the tips that I have learned along my way:

Document it

For every appointment, prescription, symptom or clinic letter you get; KEEP IT DOCUMENTED! I now have a lovely `MS folder` with all of my medical history for me to refer back to if I ever need to. When you have been told various scientific jargon from your consultant that you know damn well you will never remember, you now have it to digest and deconstruct at your own convenience.

Join a Union

I cannot stress how important this is! When in employment, your voice maybe overshadowed by people who have zero understanding of disabilities or illnesses that you are dealing with. Had I been part of a trade union in my previous job, I would have won my battle with them. At that time I was not a member and did not have the support that I needed. Trying to go through an employment tribunal was very stressful and was causing my health to worsen so I gave up the battle to get my voice heard. Having learned from this, I am now a member of Unison who have been brilliant to me. Their knowledge on equality law and employment adjustments that should be made for me is amazing. They are the booming voice that make companies think twice before doing something unlawful and just plain stupid! Sometimes just knowing you’re right is not enough in the big wide world, so having back up is so important.

Seek advice from Occupational Health

If you have an HR department or Occupational Health, then request for a medical assessment be carried out. This can be helpful to give your employer a better idea of how to introduce `Reasonable Adjustments` to the workplace to ensure that you are being looked after and can continue to stay in employment. From specialist equipment, extra screen breaks or flexible working patterns; these can be introduced to help make your working life a little less stressful!

Know your own worth

Being a disabled employee should not have any bearing on your ability to contribute new ideas or strategies to help your company progress (even disabled has `able` in the word!). If a company is not willing to keep you in employment due to your disability, then they are simply not worth working for. Don`t waste your time, tears or health on it and move onto bigger and better opportunities.

Always remember if you are unsure as to which companies adopt a positive attitude to disabled employees, the `Two Ticks` disability symbol is something to keep an eye out for. This is a symbol awarded to employers who are committed to doing all that they can to help disabled employees thrive and stay in employment. Find out more information here: www.pluss.org.uk

What companies have made adjustments to help your disability or illness? Let me know in the comments 🙂

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! ☺️