by NuttyP

My Teacake Moment – The SNP Tour Edinburgh

November 1, 2014 in MS, Politics

I went to Nicola Sturgeon’s SNP Tour on Wednesday night at The Corn Exchange in Edinburgh. Here’s my story which I really hope Nicola will read.

I’ll start by saying I want independence for Scotland. I’ve believed that all my life and has nothing to do with the English, Welsh or Northern Irish.I believe Scotland will do things better by itself and UK politics is so out of touch with the “normal” people of the country. I also believe that when Scotland becomes independent, the rest of the UK will benefit to as Westminster will have no choice other than to reform. If you’re not from Scotland, not Scottish or even voted No in the referendum, I think no less of you than anyone else. In my eyes we are all equal.

I’m sure most of you will know I’m either having another MS relapse or suffering from Neurological Functional Symptoms. I’ve been off work for nearly five weeks now with at least another week to go after my GP signed me off again. I’ve got an MRI scan next week which will hopefully give me more information.

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The stage in The Corn Exchange

After waking up to a No vote on the 19th September I was gutted and in shock. It took several days to realise I was in a Yes bubble and that’s why I was so confident Yes would win. We didn’t and I accept that. I had already decided to join the SNP on Friday 19th. As far as I was concerned it wasn’t over and I was determined to do more.

I’d booked my ticket for the SNP Tour the moment they were released hoping I’d be better by 29th October. The 29th, was a busy day. I had my amazing physiotherapist in at 11:15, an appointment with Occupational Health at my work at 13:15 in Livingston and then the Tour at 19:00. I promised my physio and consultant I wouldn’t sleep that day but I wasn’t feeling well. I was in pain and took my medication which makes me sleepy so I made the decision to have a few hours sleep before going to Edinburgh so I’d feel better. After an hour and a half I woke up to an urgent need for the toilet. Great… diarrhea. Just what I needed! My legs were also buzzing, numb and painful.

Anyone who knows me knows this would have stopped me from going but I couldn’t not go. The head was trying to talk me out but my heart was telling me to go. The heart won thank god! I’ve never really been into politics, although I have always voted SNP, I wasn’t interested until the referendum was announced and then I was completely engaged. I joined all the various social media groups and watched many live events on livestream or recordings on YouTube, many of them with Nicola Sturgeon. Having MS stopped me getting involved personally and looking back I wish I had done more. I did manage to help turn my Dad from a No to Yes so I did have some success. My nephew was the only other member of my family (blood line) that voted Yes. I spent most of the day and night of my brothers wedding talking to him about independence, so ha Bro, that’ll teach you for voting No!

Tour-Hall1

Picture Credit @ochayethenews. Very small red arrow is me!

My plan was to take my wheelchair in as I didn’t know if we would be standing, sitting etc. but where I parked my car, it was impossible to get the chair out so I decided to take my walking stick, which conveniently was in the kitchen of my house 25 miles away! Doh! Again the head was saying go home but the heart pushed me onwards. I wasn’t far from the entrance so just went for it. I was straight in and got seated second row from the front marked with the small red arrow in Twitters @ochayethenews picture. Nicola was ten minutes late starting and I was already in a great deal of discomfort and pain due to the driving, walking and small seats. Nicola’s speech was very inspirational and loads of clapping and cheers were given throughout  her speech. Standing ovations were difficult for me and every time I felt as though I was going to collapse in a heap but somehow managed to survive. Nicola talked about her favourite part of the referendum which is the whole point of this blog. She spoke about teacakes (I’m not going to spoil it for anyone still to go) which was a lovely part of the speech and a very fitting favourite! More about my teacake moment shortly.

Nicola finished her speech and if you watched ITV News with the reporter where everyone was clapping, she was three feet away from me and all I could hear was her talking to the camera! The camera man was annoying too as he kept switching his light on and off thinking it was the end of Nicola’s speech. Anyway, Kenny MacAskill came back on stage to coordinate the question and answer session. There were many good questions and I felt every answer from Nicola was honest and genuine. I bottled it asking my question which was “How do you become a SNP MP candidate. MP not MSP. I would find it an honour and privilege to serve all of Scotland, whether Yes or No voters, ethnicity, country of birth etc. and also to be made redundant from my job after Scotland getting its independence”. As I said I bottled it but maybe if Nicola reads this she might answer my question.

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Just before I noticed Nicola as I was leaving

After one and a half hours and the last questions were asked it was time for another well deserved standing ovation as Nicola left the stage. I was feeling inspired and upbeat although my legs and feet were tingling like mad. It was time to go home. I had several options of which way to leave the hall and decided to walk in front of the stage and get at least decent picture (above top left) before leaving. The queue didn’t seem to be moving very quick and people were walking back towards me which was strange and then I noticed all the bodyguards and Nicola in the middle shaking peoples hands and having a quick word with them as they were leaving. Only three people in front of me and I was in the queue to meet her! I couldn’t believe my luck. Straight away I got my phone out, being watched by several of the security guards (I would think I was dodgy if I was one of them!). When it was my turn I shook her hand and thanked her for a great speech and would she mind if I took a selfie. She agreed and the fuzzy picture below was taken. This was MS shake rather than nerves as several pictures taken just before I noticed Nicola were exactly the same (see left!). I thanked her again and told her she was my heroine. Now before people start thinking I’m some sort of weird stalker type person that’s not what I meant. Some folk have football heroes, some have music heroes, I have politicians as heroes. Yes, both Alex Salmond and Nicola Sturgeon are my heroes. What they have achieved and done for Scotland is just quite simply amazing. Further on Kenny MacAskill was at the exit but too far away to shake his hand. I said hello and thank you as I walked passed and left the hall.

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I was totally buzzing by this stage. I never thought for one second that in a hall full of 1600 people I would get the opportunity to get a selfie with Nicola Sturgeon! The hairs on my arms were standing I was so excited. I immediately text my wife Susanne with the picture and wanted to tell the world. For the whole journey home and an hour afterwards I forgot all about the MS, the pain, the pins and needles, the numbness. All forgotten! I felt like a teenager again and had just done something special that I wanted to tell my Mum and Dad about. I knew I would pay health wise on Thursday and I wasn’t wrong. I was so tired I went back to bed at 09:30 for four hours though I was unable to sleep due to the pain in the legs and the pins and needles. It’s been hard writing this but I need to tell my story. It means a lot to me.

I’m sure to Nicola I was just another supporter who wanted a selfie and I don’t mean that disrespectfully. She must meet hundreds of people that want a selfie with her and I was just another one of them. She was happy to do it and I’m really grateful she did. The difference for me was that 30 seconds or so of Nicolas time… that was my teacake moment. It was the best thing about the referendum and beyond that I liked the most. I’m sure that people reading this will be thinking “really?” or “why?” but as I explained to Susanne this morning, this was my once in a life time meeting with someone I look upon as a hero. It’s very unlikely I’ll ever get the same opportunity again and for those few hours I didn’t have Multiple Sclerosis. It was a great feeling.

Thank you taking the time to read my rather long blog!

Ewen

UPDATE: I posted a link to this blog on Twitter and Nicola was the fist person to respond thanking me for posting this and for making the effort to be there! She’s made my day again! I’m now rather embarrassed though as I emailed her office asking if they could forward on the URL for her to read as i never thought for one moment she’d see my Twitter post. I’d sent the email before I noticed Nicola had replied. She also followed me. I’m buzzing again! Simple things and all that! 🙂 Thanks again Nicola.

by NuttyP

Multiple Sclerosis & Work Speech

October 22, 2014 in MS

Visit MS Society website

Visit MS Society website

In February 2014 I gave the following speech to Occupational Therapists in Edinburgh in association with MS Society, Stroke Association and NHS Lothian. I was there to speak about “MS and work – the patient experience”. Apologies in advance for the length of the blog. Please feel free to comment or ask any questions.

My name is Ewen Marshall and I was born 41 years ago in 1973. I’m married to Susanne and have 2 children together. I also have a daughter from previous marriage and two lovely grandchildren. We live in Armadale, West Lothian.

Copyright NHS Lanarkshire

Copyright NHS Lanarkshire

In 2005 I worked for a private company who were contractors to NHS Lanarkshire, as a mobile technical support analyst looking after GP IT equipment. I was based in Cleland near Airdrie. One morning on the way to work I noticed diamond shaped things in my sight. When I say things I mean if you imagine your sight being broken up into diamond shaped flashing lines. This progressed very quickly to losing the sight in my eye and just seeing grey. The other eye was fine. I went to my GP who referred me to the Eye Pavilion in Edinburgh and was diagnosed with Optic Neuritis. After many months my eye sight came back and things returned to normal. My boss at the time phoned me almost daily to see how I was getting on and even had the audacity to say my GP was lying and there was nothing wrong with me! It was at this point I decided to look for other employment although I was still blissfully unaware I had MS. I had been for an MRI but this was clear.

I began to think that I was going a bit mad after this. I was having very strange symptoms that I couldn’t quite put my finger on. I was very tired a lot of the time and I had an odd electric shock type feeling down my side when I tilted my head. There didn’t seem to be any answers to what I was feeling, but then I was hit by optic neuritis in my other eye.

Copyright NHS Lothian

Copyright NHS Lothian

This was over a year later and by this time I had managed to get a job with NHS Lothian doing exactly the same as I was doing at NHS Lanarkshire. Not overly concerned this time with the neuritis, as I knew what it was, I made an appointment with my GP to get referred to the Eye Pavilion again. I had literally just start working for NHS Lothian. I remember very clearly sitting in front of my GP and telling him I had optic neuritis in my other eye and the look on his face. Straight away he said “this is probably MS”. I remember sitting there thinking “pfffft, MS, whatever. Never heard of that before so it can’t be that bad”. As the consultation went on and was being told I’d have to get a MRI and see a neurologist at the Western and go back to the Eye Pavilion I realised that this MS thing might be slightly more serious than I’d first thought! After having an MRI, a lumber puncture, giving many tubes of blood and appointments with neurologists I was diagnosed with Relapse and remitting MS in July 2007. There was a sense of relief in knowing finally, what was happening to my body , but, by then, having a little more knowledge of what MS was, I was concerned about what the future might hold for me.

I made the decision to tell my manager at NHS Lothian straight away, as my diagnosis had the potential to disrupt my working life. An example of this being the need for more time off for various types of appointments. I was anxious that my manager understand why I might need the time off and not think badly of me. I also decided to tell my colleagues at the same time as they would also wonder why I might be frequently absent from work. The reaction from my manager was fantastic. “No problem” was the response. If I needed any time off or any help then just let her know. It was slightly different for colleagues. I made as much a joke out about it as possible so they wouldn’t feel uncomfortable speaking to me about it but there was one guy who insisted I was lucky and not that bad as he had a sore back and eczema! I have had some staff saying I was lucky to have a blue badge and could park easily in Edinburgh but after me offering to swap my MS and the badge with them for their health they soon realised I wasn’t that lucky.

How I feel sometimes!

How I feel sometimes!

Since 2007 I’ve had various promotions and I’m now a Senior Server Engineer, still looking after GP systems so when you phone your doctor in Lothian and they tell you the computer system is down then there’s a very good chance I’m working somewhere in the background trying to fix things. My current manager is the same as my first manager as is my team leader. Nothing’s a problem as long as I let them know what’s happening. In fact, they give me into to trouble when I’m supposed to be off sick but I’m logged in sending emails or fixing things from home! I have even had the director of my department stop me in the corridor and ask how I’m getting on and if I needed anything then just to let him know. I didn’t even think Martin knew my name never mind know I had MS! I am in no doubt that I am being supported right from the very top and that just gives you so much of a boost to continue on and work your hardest not to let these people down who have faith in you.

Up until now I’ve had quite a few relapses. Optic Neuritis in both eyes, Lhermittes, my favourite of all time, Trigeminal Neuralgia (not called the suicide pain for nothing!) and a good few sensory relapses most recently being over Christmas.

At present, the symptoms I am experiencing both mentally and physically, are many and varied.

Physically, worst of all, are the neuropathic pain, numbness, tingling in my lower legs, feet and hands. My whole body often feels like it is buzzing! Before even taking a step I am in pain and this has only increased over time. I also suffer badly from fatigue which never really goes away, and have to nap regularly in order to function. Balance can also be a problem, and so I use a walking stick regularly to steady me. All of this has led to me awaiting a wheelchair and drivers assessment referral at the Astley Ainslie.

Mentally, I am forgetful. Brain fog is probably a better description. I can’t think what I want to say, for example, I know the word I want to say, and can visualise it, but cannot remember the actual word. This makes me more anxious when interacting with people.

Mood swings have been extreme at times, and I have found myself being very emotional recently.

Out of all my symptoms I feel fatigue is my biggest enemy at work. I’m in work for 8am and by 11am I’m absolutely knackered and just want to go home. Sometimes I get a second wind in the afternoon but these are a rarity. When I get home I often fall asleep on the couch for an hour or two. Symptoms were worse when I worked in WGH so my manager referred my to occupational health who recommended that I be moved to St John’s to cut down on the amount of traveling I had to do. This was facilitated very quickly by my manager. It was also agreed that flexibility to work from home should continue. I found the occupational health department very good and love how they dictate letters when you are there. I would also add that my team leader and manager have been very understanding of my condition and support me in any way they can.

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I’ve now got my wheel chair and it’s transformed life!

At present, I’m currently in a transition stage with regards to my MS where I now have to make major, life changing decisions. For the first few years after diagnosis, I carried on regardless, determined not to change any aspect of my life or daily routine, in the wake of the MS.I didn’t really have to think about it most of the time, until a relapse would arrive full throttle, and hit me like a slap in the face. As time has gone on, the symptoms I experience persist now, whether I am in relapse or not. I have had to accept that I need to make adjustments in my life in order to try and live normally. For example, I am now getting a wheel chair. I ask you to put yourself in my position with the realisation that the once moderately active me now has to look forward to sitting in a wheel chair being pushed around by someone. That’s one hell of a scary thought! Having said that I’m a positive person and there is a positive side to this. The aim is to enable me, not disable me. The pain and fatigue often leave me unwilling to go out anywhere, or to participate in family outings. By using the wheelchair as a tool to assist me, I should be able to join in more with family activities, and carry on for longer.

I feel my condition is getting worse but I do feel that I have a good support package in place at work and at home and I will hopefully continue to work for NHS Lothian for a few years yet! I’m a family man at heart and I am looking forward to spending more time with my family on day trips and holidays thanks to the changes I am making. My future is uncertain but I’ll make sure we have memories of good days gone by.

The care and support I have received over the past nine years, not only from my fantastic GP, Dr MacGillivray, but from Dr Weller my consultant, Nicola MacLeod and Mathew Justin the MS specialist nurses, also from the Occupational health staff at St John’s hospital, and of course, the management team at NHS Lothian has been tremendous, and I really cannot thank them enough for everything they have done, and indeed continue to do for me. My biggest thank you of all goes to my wife Susanne. She is my life, my everything.

 Thank you for your time.

Ewen

by NuttyP

Hypervigilance & Monsters!

October 21, 2014 in MS

Isn’t it strange how you come across things. Purely by chance I was on Twitter last night where someone I was following retweeted a link to a blog with the message “Are you or a loved one suffering with MS? Me too- and it sucks! Join me in venting! :)”. Normally I don’t bother but I noticed this was someone with MS so thought it might be interesting and clicked the link. What I was looking at was an amazing blog by Meagan Freeman. The first blog I read was titled “Supreme Hypervigilance…..The New Normal” (http://www.motherhoodandmultiplesclerosis.com/2014/10/supreme-hypervigilancethe-new-normal.html) where Meagan talks about hypervigilance and how it affects her life. I can relate to everything she says.Capture I am obsessed with scanning my sensory experiences, looking for a new symptom. I am very sensitive to being touched. Even brushing against something can give me a horrible feeling! I’ve had to threaten, jokingly I might add, people with violence to stop touching me at work. That sounds very wrong but I’m talking about someone putting their hand on your shoulder to get you attention and that sort of thing. Every time I move my head to the right and downwards I get a warm, electrical type feeling down my right side of my body. The best way I can describe it is like the feeling you get when you get in a hot bath. A rush some would call it. This used to be in my right leg where it was actually pleasant whereas it’s now moved up and is rather uncomfortable. The technical name for this is “Lhermitte’s sign“. Sorry, I digress, every day I wake up and think about what new symptom I may have. My first thought is “What’s new? How tired do I feel and will I make it through the day today?”. It’s an unhealthy obsession and could explain functional neurological symptoms I may be experiencing , if that’s what I’ve got.

Monster in the mirror

Image: Abby Kroke

Meagans other post was titled “The Monster in the Mirror” (http://www.motherhoodandmultiplesclerosis.com/2014/10/the-monster-in-mirror.html). This blog was a total revelation to me. She describes how mood disturbances are a rarely discussed common symptom of MS, so rare in fact, I didn’t even know about it! To quote Meagan:

“These disorders result from demyelination, are some of the most characteristic symptoms of MS, and have the same implications for treatment as do other aspects of the disease. Mood and affective disturbances can cause enormous pain and suffering and lead to significant disruption of family, work, and social life.”

Meagan goes onto say:

“in essence the conclusion is that these mood issues result directly from demyelination, or damage to myelin sheath with MS. Many patients will find this reassuring, because so often we think of psychological distress as “crazy” or “disturbed.” There is a stigma in our society, and it needs to end.”

It goes without saying that she explained something to me that I’ve been experiencing for some time now and never thought for one second that it was my MS that was causing it and not the “normal” reasons if there is such a thing. Hopefully by knowing this information I will now understand why it is happening and perhaps control it better. I am very grateful to Meagan for her blog and look forward to more blogs in the future.

To give a quick update on my health, I’m feeling slightly better today. Still getting pins and needles in my leg and hand and plenty of pain in my legs. Dizzy spells are easing however balance is still a problem and I’ve came close to falling again a few times! My appointment has come in for my MRI which is on the 3rd November and they’re doing my head and spine so a quality CD is required to drown out the pneumatic drill noise of the scanner! Heck I might even take a couple of amitriptyline and have a snooze for an hour. 🙂 Psychologist tomorrow, physio and Occ Health next week. I’m hoping to get back to work on Thursday but that’ll be up to Occ Health and my GP.

Ewen

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