Every River

Over the past couple of days I’ve been reflecting upon everyone who has helped me along the way, and all the people that I know will continue to support me as I continue my journey. As you can imagine, there are too many to list here but I just wanted to say thank you (you all know who you are).

There is one person though that deserves a post of his own, and that’s my husband Jonathon.

Since we met in 2006 my life has changed. It changed by meeting him, but it also changed by the impact of M.E. He has stood by me every single step of the way. I can honestly say that without him I would not be in the place I am right now. Physically and mentally he’s my rock. He’s also my best friend and we get on so well together, I am incredibly lucky.

I could go on and on but I don’t want this getting overly soppy. However I want to share this song with you. It was our first dance at our wedding and the lyrics mean just as much now, perhaps even more, as they did then.

first dance collage

Our First Dance

Every River – Runrig, I’ve chosen the Loch Ness live version of this song as we were there. I remember standing in the dark, my legs couldn’t work any longer and I was leaning on Jonathon as this song played.

The following lyrics mean so much to me. In fact they are more relevant today than ever.

Every river I try to cross

Every hill I try to climb

Every ocean I try to swim

Every road I try to find

All the ways of my life

I’d rather be with you

There’s no way

Without you

My life is full of metaphorical rivers I have to cross and hills I have to climb. I am never alone though, Jonathon is always there to help me along the way.

Thank you Jonathon. Tha gaol agam ort. xxxx

Rhoda sig

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Let Loose

Friday was a big day for me. In fact it was a day that had me worried all last week. Why? I was being “let loose”. My Clinical Psychologist (CP) got a new job and decided that I was ready to be let loose on my own.

Don’t get me wrong, it was a phased ending, she didn’t just punt me out. We decided a couple of months ago that I would just have three more sessions with her. We’d build up Mood Management Plan and then I’d leave.

Honestly I was terrified about this. I felt like my support network that we had built up was crumbling around me (my best friend is moving away and so are my in-laws so I was having a freak out). I felt like that big safety net that was waiting to catch me was getting threadbare…would it hold my weight?

So I arrived in the room and promptly burst into tears. Once that was over with we started to reflect upon my progress. I was sent to her to deal with my mood and to work on accepting my life with M.E. Had we achieved what we set out to do?

I looked at myself and realised that I am no longer in the horribly dark place I was a year ago. I no longer sleep because of depression, I sleep because of M.E. I can differentiate the two now. I have a better control of my thoughts, and those thoughts in themselves are generally less dark than they were. I am happier than I was a year ago.

I realised that I understand myself more. I understand how my brain works. I realise that I am scared of change, my default reaction to change is to panic. I am more aware of my thoughts and feelings. I’m learning to address those thoughts and feelings, not just shut them out and hope they go away. I have also learned to accept help (that was a big one for me).

Making Progress

Making Progress

Of course none of this has come naturally to me. I’ve had to work on it (which in itself is exhausting), and I imagine I will have to work on it for a long time to come.  The thing is I now have the tools to do it. I know that I have to break tasks down into manageable tasks if I want to get anything done…and I can never exceed the 50% rule (think what you want to achieve and then do half of it). This alone has meant that I have managed to achieve things, small things but things that give me a sense of achievement, a sense of meaning, a feeling that I am not entirely useless.

I am less hard on myself now. I take the time to sit and reflect about my problems, figure out what is causing them and how I can fix it. I take the time to process and try not to catastrophise!

I can’t begin to describe how glad I am I went to the CP. She was fantastic and, unlike some medical professionals, understood M.E. She understood what it’s like to live with a chronic illness and she helped me to accept it.

I have to live my life as best as I can…and that it what I am trying to do. Obviously the nature of M.E. means that I am restricted in what I can and can’t do. Some days I can’t get out of bed, but when I can I want to do something, achieve something. No matter how small and insignificant it might seem, it’s these things that help to keep me away from dark thoughts and feeling like my life has value.

There’s absolutely no way I could have done this without my husband though. He is my rock. In fact CP refers to him as her “co-therapist” because he is just so good at helping me through, at understanding and at putting plans in place to help me stay positive. Thank you Jonathon, I love you with all my heart.xx

She will probably never read this but I want to thank my CP too. She has changed my life. When I left I just said “thanks very much for everything, I hope I don’t see you again”. I couldn’t say more or I’d end up an emotional wreck. Mary you have given me back my life. It’s still going to be a battle but with everything you’ve taught me I’m going to get there. I genuinely will miss you, not just in terms of therapy but I will miss our laughs. Good luck in your new job – those kids are very lucky to have you.

So here I am, let loose. I have my Mood Management Plan. I know the warning signs and I know how to deal with them. I’ve come a long way and I’m only just realising that.

I do have an emergency plan in place though. We didn’t manage to tackle my OCD. That wasn’t really what the sessions were about. That said I understand myself more so hopefully hubby and I can tackle to OCD together. If it gets bonkers though I can refer myself back for help with OCD. I’m determined that it wont come to that and we now have two books ready to guide us through beating OCD.

OCD

So there it is. The end of part of my life and the beginning of a more positive, happy life. I don’t ever want to go back to the depths of depression of a year ago and that in itself is motivation enough to keep going.

I hope this post has helped you in some way. My CP was fantastic and I know I am lucky with that. If you are struggling, give it some thought. It’s not a sign of weakness, it’s not a magical cure, but it’s worth the work.

Rhoda sig

So this is Christmas…..

So this is Christmas

And what have you done?

Another year over

And a new one just begun.

I had the radio on the other day, it was just there, some noise to make me feel less lonely. My brain tuned in to this lyric from Happy Christmas (War Is Over). I sat there and thought….”what have I done?”

I’ve spoken before about how hard I find annual events – another slap in the face that reminds that yes I am still ill. So when I heard these lyrics my first thought was to feel all mopey and sorry for myself.

Amazingly I managed to catch myself before I descended down the helter skelter of self pity and I realised I should be reflecting on what I HAVE done. I should be thinking about the positive things I have achieved this year.

The first thing that stands out is that I am so much more independent than I was this time last year. My stairlift, the shower, my wheelchair, have all helped me to regain some level of independence. The stairlift has actually changed my life and given me more freedom in my own house, instead of being trapped upstairs or down….or putting hubby’s back under strain as he carries me up and down the stairs!

As I lay and thought about 2012, I realised that I have come a long, long way mentally. I have learned an awful lot about myself this year (good and bad). I am more in tune with my body and more aware of my limitations. I’m in a better position to manage my condition – even though I hate that phrase. I appreciate that if I’m actually going to be able to talk to hubby when he gets home I am going to have to sleep in the day – that’s acceptable, that’s what my body needs to function, why fight it? Previously I would struggle, I felt I was being weak by napping, that I should fight back, I didn’t want to be defeated by M.E. I was clinging on to a false hope that I could beat this condition with sheer bloody-mindedness. Don’t get me wrong, I’m still determined, but I think my determination is beginning to align more with being sensible. I’ve not given in, I have accepted (more or less) what I need to do to make the most of the life that I have right now. I’ve (largely) stopped wasting energy being angry at M.E. and started using that saved energy to do something pleasurable – trying to read for example. Does that make any sense?

Naturally I now want to fire on and focus upon all the things I still have to improve, the things that are still causing me frustration, anxiety, exhaustion. But this isn’t the time for that. This is the time to celebrate what I have achieved and to thank those people who have helped me get there – Jonathon and my CP are top of that list.

the ladiesThen there are events,special events, that I have managed to attend. For me the main one was my Mum’s retiral dinner. I was determined I was going to be there, she’s only going to retire once and I didn’t want to miss out on being there with her on her special day. I won’t lie, it was tough but I did it, we did it. J was there by my side to help me every step of the way.

Me, my sis & my Mum >>>

What will 2013 hold? Who knows! All I know is that I am in a better position mentally to cope with whatever is thrown at me, at us.

Thank you for your support throughout 2012. I can’t quite describe how much it means to me.

Best wishes for 2013……BRING IT ON!!!!!!

Rhoda sig

Self Compassion

This time of year always presents me with some challenges. Why? Well it’s my birthday as well as an annual rally back home on Mull that I used to compete in – in fact I started navigating when I was 16.

Why should these two events bother me? Well annual events tend to smack me in the face a bit. They make me realise that another year has been added on to my ME Years, that another year has passed within these four walls, that year 28 of my life has been a write-off just like 27, 26 and 25.

This year though I don’t feel quite so bad about it all. Why? Well a few reasons. First of all my husband made my birthday really special. He knows how hard I can find it, he knows how low it can make me and so he treated me like a princess. Honestly I’m so lucky to have such an amazing husband, someone who understands and supports me completely.

Then there’s the fact that I decided to actually voice these feelings to my CP. It wasn’t easy to do, I almost felt like I was being shallow about growing older, but as with everything  I’ve taken to her so far she understood. She quite rightly pointed out that I’m focussing on the negatives (something hubby tells me a lot). Instead I should be thinking about where I am now compared to last year, the things that I have achieved, the things that have changed in our lives. She has a friend who every year writes down the things she has achieved in that year, so as to highlight the good and perhaps the stuff that needs worked on.

So I thought about it. Well now we have a support network. I have my CP, a new wheelchair, a stairlift and I can have a shower thanks to my new stool.  I understand myself better. I am working on my OCD, on understanding my limits, on achieving small things and taking the good from them rather than being “gutted I couldn’t do more”. I am learning to be more self compassionate. Yes physically I might have gone back from where I was last year but mentally I’m in a much better place.

So this year I turned 29 and although I know I’ve not achieved all those things I thought I would have done by this age, I now know that I have to put that behind me. I have to focus on what I have achieved and what I’d like to achieve next. They are small aims but they feel just as amazing as achieving my old aims did. Does that make sense? For example I am already feeling mastery and achievement at having written this blog post. I feel great mentally. I feel the same achievement from this as I would have felt from cleaning the entire house back in my well days.

The rally is on tonight and all weekend. I am gutted I can’t be there to watch but I have my phone so I’ll be able to text friends and keep up online. It might not be quite the same but I can still be a part it, just in a different way.

So I guess what I am saying is this. Be more self-compassionate. Don’t be so hard on yourself. Reassess your situation. Stop and smell the roses rather than focussing upon the thorns.

If you are interested in finding out more about self-compassion then I recommend this website. There’s also a quiz on there so you can see how self-compassionate you are. I didn’t do well but it has opened my eyes and so I aim to do better!

A Bit of Help

It’s been a while since I have posted, sorry for the silence! I have so much to tell you that I’m not really very sure where to start.

The past six weeks or so have seen some changes in our lives, changes that are as a direct result of the O.T.’s visit and the C.P.’s help.

The biggest change is that we now have a stairlift in the house. I honestly wasn’t sure how I felt about this to begin with, the thought made me feel like I had aged 60 years. That all changed the minute I sat on it for the demonstration!

This is by far and away the best thing that has happened to us in terms of physical support. I can’t believe how easy it is for me to get up and down the stairs now (relatively speaking of course). It has given me more freedom, it means I don’t have to live my life in one room, I can get downstairs if I feel up to it and that is just amazing.

From hubby’s point of view it has saved his back as he was frequently carrying me up and down the stairs. I have to say it was quite comical but we were both just waiting for the day we went head first down the stairs!

Other additions to the house include

  • a perch stool in the kitchen so that if and when I feel up to doing something in there I have something to sit/lean on.
  • a pickerupper thing…I don’t know what it’s called but it’s pretty handy.
  • a leg sling to help me get my legs out of bed in the morning.
  • a toilet frame which has added height to the toilet as well as grab rails to help me get up.
  • a stool for the shower so I can actually shower again! I burst into tears the first time I used it!

They are all fairly simple things but wow they make a difference! Yes, I still need help but I’m starting to feel a bit more independent….and therefore a bit happier too.

To be honest I can’t quite believe that we struggled on without these things for so long but it never once occurred to us that we could be getting some help in this way. If it wasn’t for the C.P. we’d still be struggling along.

I’m not saying life is easy now, it’s definitely not but wow it has made things that bit more manageable!

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.