Understanding – inspired by two toddlers.

Sorry I’ve been pretty quiet  for a while. I actually do have a lot to tell you and update you on but I think I will save that for another day. I’ve been lying in bed this afternoon thinking and I had some thoughts I’d like to share.

I have a very lovely bestest friend, Liz, who has two wee kids  – Jonny is 3 and Sophie (myGoddaughter 🙂 ) is 14 months. I absolutely love spending time with them all and although even just half an hour in their company can be exhausting, it can really help to lift my mood.

They popped over earlier today to collect our hoover (we don’t share hoovers, theirs is broken!). In the short time they were here Jonny picked up my elbow crutch and started walking about with it. He loves using it and we certainly don’t discourage him …. unless of course there is something or someone to be damaged!

Today Liz said to him “Jonny, be careful with that. Auntie Rhoda needs that stick so just take care. What would she do if she didn’t have it?”

His answer was “use her wheelchair of course”.

I burst out laughing. Not because it was particularly funny but because here is a three year old boy who just accepts that Auntie Rhoda needs a stick and a wheelchair. He doesn’t find it odd, it doesn’t bother him at all.

A few minutes later I see Sophie trying to use my crutch. Now she is 14 months but she is trying to use it in the same way as I do. It was really cute and it got me to thinking.

In the past we have ventured to the shops and Jonny has pushed my wheelchair – a pretty hysterical sight it has to be said. He loves doing it…. although he also likes trying to crash it into shop windows but that’s a story for another day.

These two lovely children have no qualms whatsoever about me being a bit different. Sophie happily sits on my knee while her Mum pushes me along hospital corridors. They both love to use my stick … and well tomorrow I get my stairlift I can just imagine their reaction to that!

There is a point here somewhere, it’s just taking me a while to get to it.

Jonny can be in the car with his Mum and will say “oh look that person has a stick like Auntie Rhoda” or “that man has a wheelchair too”. He is aware of people that might appear a bit different, but he is aware of them in a good way. He isn’t scared of them or wary, that’s just who they are to him.

I can often be sitting in my wheelchair somewhere and have teenagers staring at me. I just smile at them and we carry on. If wee kids talk to me, I talk back to them. Most of all though it’s just a stare that I get.

Now don’t get me wrong I have absolutely no issue with that whatsoever. However watching Jonny and Sophie today I realised how my illness will have an impact on them as they grow up. Not an adverse impact, it will make them more open-minded, less scared of things that are different.

It made me think that maybe nurseries or primary schools should spend more time discussing disabilities or people that are, for want of a better phrase, “a bit different”. What do you think?

My Mum is a teacher and every year at school they have an equal opportunities day. Last year she led sessions about MS and how it can affect someone. (If you want to read more about this click here). It got a great reaction from the kids and they now understand why she has to walk with a wheelie or use her scooter.

So what’s my point? Well perhaps just that a bit of knowledge can go a long way towards understanding. In these days where disabilities and benefit cheats are, very wrongly, associated, maybe it’s time we educate the younger generation. Maybe it’s time for them to understand people who are a wee bit different and become less wary of them.

Does that make any sense? I hope so.

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Acceptance

So, the past week has been tough. I’m still recovering from the wedding but I still feel that it was totally worth it. So when I’m feeling a bit down I just remind myself of how amazing it was to be there.

Today though I had to get up and get myself downstairs because I had an appointment –  the O.T. was coming round to assess me and our house. Truth be told I was a bit nervous about this, not least because I had to talk to someone new, but because I had to be open and honest too. That’s something I’ve been working on, dropping the front and telling people just how hard things can be. This is all thanks to my appointments with my psychologist. I was also worried about what she would say – would she think we need help or would she think we were wasting her time?

Well I’m pleased to say that it went really well. She was lovely and understood when my words were muddled or when I could only climb a few of the stairs. She left with a list of things that she is going to order to help me, help us.

Oh crap I just started crying! It’s hard to describe why though. I think it’s a feeling of relief. Relief that the authorities are helping, that they aren’t just disregarding M.E., that we are actually being helped without having to fight, battle, exhaust ourselves to gain a victory.

At the same time though there’s this little bit in the back of my head saying  “Rhoda, you are 28, you shouldn’t (that is an evil word which I am trying to eradicate from my vocabulary!) need a stool for the shower or a frame for the toilet”. I’m quite annoyed with that bit of my brain…you see I’m learning to accept my life as it is. I’m trying not to compare my life now to my life before…or the life of my friends. Part of that is accepting help, accepting that our lives have limitations and embracing that. Does that make sense?

So yes I might be 28, walk with a stick, use a wheelchair and potentially require a stairlift, but that is just me. That’s who I am. Things might change, they might not. But right here, right now that is what I need, what we need, to operate, to get the most from the life that we have right now and the majority of my brain now accepts that.

So I’m sitting here now thinking about how lucky I am. For three years I’ve known how it is to feel alone, like no-one cares or wants to help. Now though I have a support team that isn’t just my family and friends. I have an O.T. who is there to support me and I have a truly amazing clinical psychologist who is determined to help me.

I truly feel that going to see the psychologist was the best thing I’ve done in these “M.E. years”. Living with a chronic condition requires a new mindset, I might not quite be there yet but I’m certainly a million miles better than I was….and I aim to improve.

Life is changing, my health might not be but I no longer feel like I’m free-falling. I fell like there are more people there to catch me and stop me from falling too far.

“Understanding is the first step to acceptance, and only with acceptance can there be recovery.” – J.K. Rowling

I did it!

For over a year now I’ve known that this weekend would be a hectic one, one that could really test me. Why? Well it was our friends’ wedding! A wedding is one of these occasions that we all hope are a once in a lifetime event so there was no way I was going to miss out.

For the whole of last week I rested as much as possible. I had this goal that I wanted to achieve, I wanted to be at that wedding. So every time I found myself about to do something too tiring I immediately stopped myself and knew that it was for the best.

So Saturday came and I’m pleased to say I made it! In fact I lasted much much longer than I thought I would. It was such a great day and it was so nice to see everybody. I’ve said it before but M.E. is a very lonely condition, so although I found it so tiring talking to everyone I kept reminding myself that just for this one night I had the opportunity to talk to friends! 🙂

All in all I had a great time. I sat my bum in a chair and didn’t move, I just concentrated on talking and catching up with friends. I was, and still am, so proud of myself that I managed this. There were several times I was about to give in and go to bed but despite knowing how awful I would feel the next day I kept going.

Yesterday however was terrible. I slept the entire day, only getting up at 4.45pm to eat my lunch that I had been far too tired to attempt at 1pm. Today I am extremely tired, sore, foggy, etc etc but I don’t care. I’ve achieved something. I made it to a wedding! I spoke to friends! Everyone was so understanding and looked after me the whole way through the day, I couldn’t have done it without them.

Thankfully I don’t have any other big days lined up for the next year! I know I pushed myself too far on Saturday, I know I couldn’t handle anything like that again for a very long time, but I did it! Yes I’m living with the consequences now but for once it’s worth it – I was there on their special day!

Congratulations again Mr & Mrs Bowie!

 

PS I just wanted to add that days like Saturday make me realise how much people care. It’s easy to forget that when you are lying in bed. I’m very lucky to have some truly wonderful people in my life, even if I don’t see them nearly as much as I would like. Thank you all for being there for me, for helping me on Saturday and for talking to the foggy brained zombie in the corner! 🙂 xx

Pinching Myself

I’ve just stopped shaking so I can write this post. Last month I wrote about Life’s Victories – those little things that just make such a difference to your life. Well since I blogged I’ve now got my flashy new wheelchair! This wheelchair has big wheels so I can self propel it and not feel quite so useless when going to the loo etc …. getting someone to park me in the loo then negotiating things to lock the door wasn’t much fun. Now I can wheel myself through that door – YIPPEEEE

Anyway, earlier this afternoon I got a phonecall from my clinical psychologist (C.P. from now on). I had a momentary panic as I thought she was calling to postpone our appointment this week and to be honest I’m actually really looking forward to it. Well that’s not why she was calling. She wanted to give me a “heads up” as she had just spoken to social work about getting us some kind of help in the home … not “home help” as she knows I would hate that but maybe some equipment to help make both my life and J’s life a bit easier.

“There’s one thing though Rhoda, you have to be specific. I know you hating asking for help but you have to tell them how it is on your worst days.” EEEEK, I’m rubbish at that, I’m so used to putting up this front that everything is fine and dandy that when I’m asked to be honest I find it really hard, I’m always trying to put a “cheery” spin on it.

Anyway my C.P. assured me that we would talk through it all at the appointment and I wasn’t to worry just give it some thought. Cool, I can do that.

Two minutes later my phone rang again, it was the social work department. Now I am terrible at talking on the phone to people I don’t know, I get my words all twisted, I feel embarrassed when I can’t remember what I was just saying, I find it hard to concentrate on what they are saying….etc. So you can imagine that I kind of freaked out when I got the call.

The lady however was lovely. She said she understood how hard it is to describe things, she wrote down everything I said and she promised that someone, maybe herself, will be coming out to see us and to see what they can do to help us. AMAZING.

I put down the phone shaking. This is such a big thing in our lives and will make such a huge difference to the way we live.

No sooner had I taken a few deep breaths to calm down than she phoned again to say that she would be sending someone out to help us fill in some forms. She gave me a time and date and said we’ll get out to see you soon.

I put down the phone and tried not to cry. They were tears of relief though. It feels like someone has just lifted a small house from my shoulders, maybe not completely it’s kind of just dangling above now but it’s better than it was.

I’m now sitting here pinching myself. Are we really getting some help? Do the authorities actually care? Well it seems that my C.P. does because without her none of this would have happened!

Hopefully next month I’ll have some progress to report, but right now I’m just so grateful to my wonderful C.P. for caring and helping, and most of all for understanding. Thank you.

Hope Shines Through

Just a wee post today. I’m not quite sure if it’s going to make any sense as my brain isn’t really working but I felt I wanted to write.

For the past week I have had severe pain. I spent last week in bed and have now progressed to the couch. Dealing with pain can be really tough. I tend to think that I am used to it as I am generally constantly in pain, but every so often it escalates to the point that I have tears in my eyes, painkillers in my stomach and splints on my wrists.

Being in constant pain obviously takes its toll and as a consequence I get extremely tired (even more so than usual). It’s hard to stay positive at times like this but I’m quite pleased with how I’ve coped the last seven days.

One of the things that has really helped me to get through this is a girl called Sam. Sam lives really nearby but we have never met. She has M.E. and runs a local support group – which I am DETERMINED I will get to one day….I was too ill last Wednesday to make it. Sam has a brilliant blog which I urge you all to visit. She has written some great posts and posted some amazing vlogs too.

On Friday Sam did an fantastic thing. Something that gives me so much hope – she RAN with the Olympic torch! Right now I can’t even imagine what it would be like to run a metre, but Sam ran a mile – a WHOLE mile, while carrying the Olympic Torch!

What is particularly amazing about this is that not so long ago Sam was walking with two sticks.

I actually cried when I saw what Sam has achieved – bloody hell I have tears in my eyes right now just thinking about it! At one point Sam was in hospital unable to use her legs….and now she is RUNNING!!

I just find this inspirational. Sam proves that people with M.E. can improve. You can tell from her blog that she is a very determined lady and she has worked hard to get herself where she is right now. It gives me hope.

So as I lie on the couch with pain throughout my body I am thinking of Sam. I’m thinking of the huge achievement of a lady I’ve never met but who has inspired me and given me hope that maybe this wont last forever.

WELL DONE SAM!!

Image from the Sam and Me Facebook Page.

 

Speechless (almost)

This morning I got a phonecall, I phonecall that reduced me to tears….but in a nice way.

My best friend from school, Kim, who I haven’t seen for years (literally), phoned to tell me she had just finished the London 10k. She was standing outside Buckingham Palace in the 30 degree heat having just run 10k in less than an hour – absolutely amazing!

That fact alone brought tears to my eyes but what really made those tears roll was the fact that Kim ran the 10k today to raise money for the ME Association.

It’s quite hard to explain how much that means to me. Our friend Fraser ran in Washington DC last year to raise money for the same charity and the fact that these two lovely people have put themselves through so much to support not only me but everyone with M.E. leaves me speechless.

I quite simply can’t imagine running 10k….I can’t imagine running 10m. In fact I sit and watch sport on the tv and just watching it exhausts me, but when I think about people actually running about for 90 minutes on a football pitch it blows my mind. I’m not sure if that’s a feeling that “normal” people get too, is it?

I have huge admiration for anyone who can run 10k, particularly in the 30 deg heat, and in such a great time. The fact that Kim chose me and M.E. as her inspiration is just quite incredible.

M.E. can be a very lonely illness and as you are lying in bed you often feel like everyone else is carrying on without you. For someone to ask if they can run a race for you it reminds you that you still have friends, you still have people that care about you, you still have people who support you and want you to recover, you still have people that love you.

Thank you Kim for taking the time, effort and energy to support me and remind me that people really do care. I’m so grateful, so blown away, almost speechless. Thank you.

If you would like to sponsor Kim and make a donation to the ME Association please visit Kim’s Just Giving Page.

Life’s Victories

My life is all about small victories…. the victory of getting up in the morning, of having a conversation, of writing a blog post. It’s these small victories that keep me going day after day, well that and my husband.

Life can feel like a total battle sometimes, whether I’m battling my body, my mind or the health service, it feels relentless at times. However I have some victories to report to you today, victories which have made me realise that there ARE people out there who care and want to help.

First of all, a few months ago I got my wheelchair. It’s the most basic, plain wheelchair but I love it! It means I can get out of the house! Obviously not on my own, but it has given me some hint of freedom on my better days.

Then on Saturday a little piece of laminated card popped through the letterbox. This little piece of card is as though someone is saying “yeup, you need this, I agree you’re ill”, it’s like a key to a new world, the world of oudoors! That little bit of card is a Blue Badge.

It’s hard to put into words how much this piece of card means to us. It will make a massive difference when going to hospital appointments not least because J wont have to push me for miles or struggle to get me from the car to the wheelchair because there’s no space between cars.

RANT ALERT!

I have to tell you about our ridiculous trip to the hospital the other day….before the blue badge. J parked up the car a considerable distance from the entrance we required, that was to be expected and we figured it wouldn’t be too much of an issue as J could just push me in the wheelchair on this occasion. Wow did we underestimate that short journey! All was going well until we came to the first of many roads we had to cross. I think you can guess where I am going here…the kerb was HUGE! In fact there were no lowered kerbs anywhere to be seen! J had to struggle with the wheelchair to get me from pavement to pavement and eventually we just walked along the road!!

Now surely outside a hospital of all places there should be a decent level of accessibility? J is 27, he’s fit and well, but tackling these kerbs proved very difficult. Imagine an elderly couple trying to get to an appointment or even my own parents, I know they’d struggle (note parents I’m not calling you elderly!).

Completely disgusted by this I have resolved to take it up with the council, when my brain will cooperate long enough for me to write some kind of coherent letter!

RANT OVER!

Apologies for that wee tangent!

So, back to my victories! Well I arrived at the hospital the other day to see my clinical psychologist. She took one look at my wheelchair and burst out laughing. At first I was kind of taken aback… why is she laughing? This is brilliant! This is my relative freedom we are talking about here. Anyway it turns out she thought it was the most “unfit for purpose” wheelchair she had ever seen! Why? Well I need someone to push it at all times, I can’t even move myself a few inches without help.

I’ve mentioned before how much I hate asking for help, and well the psychologist quite rightly pointed out that this was the worst possible solution for me from a psychological stand point. The great news is that she did something about it and I’ve now to get a wheelchair upgrade!

What’s my point? Well my point it this. I was so amazed by the victory of actually getting a wheelchair that I would have taken it no matter what it was like. For us, it was a life changing event and we were just so pleased to be given this help! However, for someone else looking in they couldn’t believe that we classified this as a victory. In fact she was so appalled by it she asked my permission to contact the relevant authorities to sort it out.

Then another amazing thing happened…….. she wanted to help us MORE! She has put the wheels in motion (sorry) to get an Occupational Therapist (OT) out to our house to see what kind of help we can get at home. I thought I was going to cry…. someone was helping us, someone cared. Someone was taking the time out of their day to make phone calls and fight our battles for us. Someone was leading us to victory!

I can’t quite describe how amazing that feels. For 3 years J and I have struggled on by ourselves and to be perfectly honest until now no-one has shown an ounce of concern about how we get on at home or how J copes! At my assessment for my blue badge I was with TWO OTs, I told them that J has to carry me around the house and their only reaction was “ooh he must be strong”. That was it!

Yet here we are now with the support of a wonderful lady who cares. She doesn’t just care about me, she cares about J too, a man she has never met! Do you know what even if nothing comes from her phone calls and the OT visit I will still be immensely grateful for the kindness and help she has shown us. She was shocked that no-one had tried to help us with this before and in a way that kind of just sums up our whole experience with the health profession since I got ill…they’ve done the bare minimum to help up til now.

I feel like for once people are starting to realise that it’s not just me, but J that needs help too. I feel like we have won a huge battle without even really realising we were fighting it. I feel like this could be the beginning of some help, but importantly to me it’s help I didn’t HAVE to ask for.

Victories can be hard to come by in this world, but every time I sit my bum in my wheelchair or pop my badge in my handbag it’s a reminder that there are people there who care, who want to help and who, finally, have some understanding of M.E.

Me vs My Mind

I was rather quiet for most of April, I hadn’t planned to be, but you soon learn when you live with M.E. that planning is a bad idea. What do I mean? Well planning to have a friend round for a coffee next Friday morning…it never works. Invariably I have to text the night before or in the morning and say “i’m really sorry I’m just not up to it today”. In fact I should probably make that a template text on my phone! I’ve always liked having plans in life…maybe that’s one of the reasons why M.E. can really bring me down?

I’ve never really spoken out about my depression before…and in actual fact 10 minutes ago when I started this post I had absolutely no intention to…yet here I am. I was talking to a friend on twitter today who has a chronic illness, like me when she first went to the doctor she was told it was depression. Like me, she didn’t actually have depression at the time, but like me she does now as a result of her condition and everything she had been through.

I have been on antidepressants for six years now – wow, that has actually really shocked me, I’ve never added it up before. When I was first sent to the clinical psychologist because my illness was “all in my head” I was prescribed with them, and I took them hoping against hope that they might actually have some kind of effect. In fact they made me even more of a zombie than I already was, but over time my body got used to them. Did they make a difference? Well they had absolutely no effect on my M.E. that’s for sure!

Six years later and I now take three times that original dosage. This time though it’s because I really am depressed.

I’m pretty sure that if you asked most people I know they’d say that I’m not depressed. Why? Because whenever I see people I have this need to be the “cheery”, “positive”, “things aren’t really that bad” Rhoda. I try to hide how bad my M.E. is and I definitely try to disguise my mood. The truth is though that in my head I can be feeling like there is no point to my existence.

I don’t quite know how to explain this. I feel like I’m lying in bed or flopped on the sofa and the world is carrying on without me – kind of like when you were at school and you’d get out early to go for a doctor’s appointment and realise that in fact the whole world was still revolving outside those four walls – make any sense? Every year my birthday comes around (as they do) and I realise that’s another year of my life spent in the house, imprisoned by the M.E. jail.

I think about what I’ve actually achieved in these M.E. years, I think about what I had planned to achieve by the time I was 28. I try to get myself to the bathroom and realise that ten years ago I would feel the same level of exhaustion after helping my Dad at the croft all day. I feel useless.

There have been some truly really dark days and weeks which although I’d like to share, I can’t. Just the thought of people I know and love knowing how I’ve been feeling is enough to put me off.

I actually requested to go back to the clinical psychologist last year as I felt that my mood was getting too much for me to cope with, and I needed someone that I didn’t know to talk to. I think that has been the best move I’ve made in these M.E. years. To have someone there to talk to, someone that I don’t feel I have to protect, is invaluable to me.

Of course actually getting there and seeing the doc requires planning and she often gets the “I’m really sorry I can’t make it” line from me. She doesn’t care though, she just sends me out my next appointment and we see if I can make it.

The appointments in themselves absolutely flatten me, never mind getting there etc, and I know that for days afterwards I will have to try and recover. Even just talking exhausts me, but I know that I’m helping to remove the dark clouds that gather in my head and for me that’s worth all the pain, fatigue and stress of going.

Since I’ve been seeing the psychologist I have discovered that I have OCD. I can hear people groaning from here….she goes to see a psychologist and suddenly everything is wrong with her. I can assure you that’s not the case.

I’d been behaving very strangely for months (moreso than usual!) and this odd behaviour was not only extremely tiring but really depressing, I couldn’t control it! This is the first time that I’ve actually written it out, thereby make it real! It all started when I HAD to hold the fridge closed for 10 seconds, which soon became 5 x 10 seconds, which soon became holding the taps for 10 x 10 seconds, then even controlling the length of time I was on the toilet in terms of 10 seconds. That’s just a hint of it, there’s plenty more!

I actually thought I was going mad. I’d check the window was shut 10 times, I’d press my back button on my phone 10 times before I went to sleep, and I had absolutely no idea why I was doing it but there was no way in Hell that I could stop myself!

When I finally found the guts to talk about this I was told it was a “manifestation of worry”. It took me and my foggy brain a while to get my head around but then it all made sense. I spend all day alone while J is out at work, I’m too tired to talk on the phone and have no energy to do anything of substance. So I was channelling all my worry and stress into things that I could do …. hold the taps after washing my hands etc. Does that make sense? I’m not sure I’m explaining it very well.

All of this was adding to my stress, my low mood and ramping up my anxiety. Not to forget using up huge amounts of my energy!

It’s been a struggle but I am getting better. I know I worry far too much about things way beyond my control and I know that I still have a lot of my OCD traits but I am working on it. By working on it I feel like I’m actually achieving something and that feeling of mastery is helping my mood.

So you see although at the start when they thought it was all in my head it wasn’t, now I have a new thing to deal with….my mind.

…..and so it goes on….

Well I did succeed in getting my degree. I couldn’t have done it without the help and support of my family, friends, fellow students and the Prof. The day that I shuffled up to get my degree was just amazing. Despite the fact I was terrified I was going to fall there was no way I was going to miss out on this moment. Five years of hard slog and I had it, that bit of paper that justified the last 5 years of my life!

So anyway, that summer I started to get a wee bit better. I started to believe that perhaps this illness was leaving me. In fact by the end of the year I had started work as a Graduate Engineer.

Over the next two years I still wasn’t well but I was coping. I would fall asleep whenever I sat down, avoid walking too far and generally just be cautious. In that time I managed a work visit to Bath and to Berlin, I kept up my rallying although it was becoming increasingly more tiring.

I remember one day we were doing a single venue event and my driver (ooh I sound posh, my rally driver, the guy I navigated for, not my chauffeur) pulled out two bikes and suggested we take a cycle round the track to have a recee. Yup sure I said and jumped on the bike. By the end of the first straight my legs were jelly but there was no way on this earth I was going to show my weakness, so what did I do? Well when we got to every corner I stopped and “wrote down some notes”. I didn’t want him to think that I was unfit let alone ill so I tried my hardest to cover it all up. Looking back he must have wondered what I was up to. It’s not like I couldn’t have told him about it, I was really close to him but I didn’t want the guys to think of me as weak so I just plodded on.

Anyway, how did I get on to rallying? I do like the odd tangent I must forewarn you.

Over time I was finding work harder and harder. My brain wasn’t working as it should and my hands wouldn’t work, I spent days typing with one finger of my left hand and using the mouse with my left hand (I’m right handed). I was determined that it was just a blip and that I’d get better.

Eventually one day I had to admit defeat, I just couldn’t cope with it all and I cut down on my hours at work. My work were, and still are, very understanding. We shaped my hours to fit my health and for a while that was fine.

Ever since I left Uni I hadn’t stopped bugging the doctor. I was adamant (as was everyone close to me) that there was something wrong! I was sent to a clinical psychologist, I was put through MRI scans, a lumbar puncture, some weird test where they attached wires to my head and gave me a wee electrical shock (they assured me it was legit!), ultrasounds etc. Finally both the neurologist and rheumatologist decided upon M.E.

I remember being weirdly happy when they told me that’s what they thought it was. I know that sounds odd but FINALLY after over 2 years I had some kind of diagnosis…they weren’t just sending me off to wait it out, they actually believed me and believed in this horrible illness.

That said both of them (separately) told me that there was nothing they could do for me. You see nobody really seems to know much about this condition. They don’t know how long it lasts…some times a few years, sometimes a lifetime… They don’t know how to cure it, all you can do it “manage the symptoms”. That is one of the key things for any M.E. sufferer, it really is the only thing you can do…however I have come to hate that phrase! Those words make me cringe. I was talking to J about this the other day and I found it quite hard to explain. While I do embrace the whole “manage the symptoms” psychology and the physical aspects of it I am just thoroughly sick of hearing that phrase. It’s like the default phrase that all the docs say….. sorry there’s nothing we can actually do. You will just have to manage the symptoms. Then they look at you with this pathetic wee smile and send you home. Maybe that’s what I hate about the phrase, it epitomises the uselessness of the health professionals when it comes to this condition. Still, I live by that detestable phrase and the action of managing the symptoms helps me to get through each and every day.

So there I was, packed off with a diagnosis, some tablets to help nerve pain and told that perhaps I could try “graded exercise”…..I’ll post more about that another day but it’s fair to say I also hate that phrase!!

Plodding along on reduced hours at work was still so so hard. Some days walking from the car park to the office was enough to floor me, let alone actually switching on the computer and doing some design work. My brain wouldn’t work, my body wouldn’t cooperate and one day in 2009 I stayed off work…..I’ve not been back yet.

So there you go…..a boring, background story so you can see where I am coming from as I continue to blog about my life. I hope you’re still with me ………….

From the beginning…

I’m sitting here looking at a brand new, empty blog. How to start? What to say? Well I guess I should start somewhere around the beginning. Oh but how to identify the beginning?

Flash back ten years and you will find me juggling all the loves in my life. I’d be studying at Uni…in fact that wasn’t a love at all but it was something that had to be done…. sitting in the navigator’s seat of a rally car shouting commands and generally bossing folk about (I’m pretty good at that)… hanging out with friends, working on the croft with my Dad…. in truth I didn’t stop. I had an active life. I was always busy.

Flash forward five years and I was in my final year at University. I had always wanted to be an engineer so being within 2 semesters of a Masters in Electrical & Mechanical engineering I was close to achieving that childhood dream.

I met boyfriend (now husband, who will just be referred to as “J” in this blog) in the May of 2006 and was having a great time getting to know him, hanging out with him and his mates and generally falling in love. Corny as it sounds I knew that he was special when I met him….. since then he’s exceeded all previously recorded levels of specialness…. he’s my rock.

Anyway back to the story. In Nov 2006 I started to feel very unwell. I had terrible headaches (like an elephant sitting on my head), a sore neck and was so tired I just slept all the time. I got myself off to the doctors and was told it was just a virus. A few weeks later I returned to be told it was probably viral meningitis and not to worry it would just take a while to go.

Great, the word meningitis in itself terrified me but they assured me that it wasn’t serious. That was the start of it….the start of my illness and the start of many, many frustrating visits to the doctor.

After a few months it became particularly apparent that I wasn’t getting any better. I had somehow sat my January exams (to this day I don’t know how) and was into my final semester of university, but things were getting worse. I was struggling to walk, even a short walk to the end of the road was too much for me. However I am a stupidly stubborn individual so I kept trying to go to University and pretend that everything was normal. In hindsight this probably wasn’t the best idea but after five years of uni there was no way I was letting that degree slip through my fingers.

Well needless to say I couldn’t keep this up. I ended up virtually moving in with J and his flatmates (who were absolutely amazing, thank you Stevo & Fettes) as I couldn’t cope with the stairs to my own flat…or with being by myself. It was then I found myself constantly in bed, I couldn’t lift my head off the pillow. On the rare occasion I did it was to eat before going back to sleep.

The doctors decided that hmm perhaps there was more going on than just this virus and after many blood tests I was told I was low in folic acid and that was probably the cause. So I armed myself with folic acid and set about rectifying the situation…….you guessed it, no change!

There was a fear that I may have MS. You see my Mum and my aunt both suffer from this horrible, cruel disease and so I was referred to the hospital. Well I wont bore you with all the details but after all the relevant tests they said that no, thank goodness, I didn’t have MS, but they didn’t know what it was. However they suspected that it was in my head and would refer me to a clinical psychologist.

I’m not quite sure it’s possible to put into words how angry I was….and still am… about that! IN MY HEAD? Are you effing joking?! I can’t walk! I struggle to move my arms, I have weird feelings in all my limbs, hellish headaches, soreness throughout my body, not to forget sleeping all the time and you are telling me that it’s all in my head?

Now I do appreciate that there is a rather large link between body and mind, I’m not denying it. However to be told that this illness was psychological was quite frankly heartbreaking. I knew it wasn’t, why wouldn’t the doctors realise that?

I can still remember that smug bitch’s face as she told me it was probably a reaction to my Mum becoming worse with her MS and that by talking to a psychologist it would be resolved.

I actually wish now I had punched her in the face..not that I could have physically managed it but I swear if I ever see that woman again the least I’ll do is accidentally trip her up with my stick!

So there I was, living in my boyfriend’s bedroom, unable to do anything and knowing that I HAD to finish my degree.

That was when the Prof. came to my rescue. I always call him the Godfather because whatever you asked him for, it was done just like that! He was head of department and a lovely man. I had several meetings with him and it was decided that if I could contribute towards my group project I wouldn’t have to sit my final exams as I already had enough credits to pass.

It was as though the massive elephant that sat on my head has just farted. My head felt lighter….maybe this was all going to be ok?