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

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.

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.

…..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?