M.E. Awareness Day

Sorry I’ve been so quiet of late. The past few months have had highs and lows, with new treatments tested, horrible levels of pain and the usual fatigue. However they have also included a week away with hubby that was just brilliant and that I wouldn’t have thought would be possible.

I wanted to post this yesterday but couldn’t so I’m sorry it’s a day late. Yesterday was International M.E. Awareness Day – I hope you saw some tweets or Facebook comments about it!

Please take a couple of minutes to help raise awareness of M.E., whether it be a tweet, a Facebook comment, an email, or good old chatting to friends.

If you feel you’d like to do more for M.E. and M.E. research there are various fundraising ideas here …. you could do a Dressing Gown Day at work, school or uni?

Whatever you choose to do, however you spread the word, THANK YOU!!!

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I hope to get back to posting more frequently again soon. I’m battling with my mood again but I am doing all the effective things I’ve learned from the CP to help me through. 🙂 x

I Love Social Media!

I love social media! I find it a great support tool. I’ve “met” lots of fellow M.E. sufferers through Twitter and Facebook. It’s great to have a chat and to know that you are not alone. You can respond in your own time, it’s not like having a conversation and finding your energy drain away. You just respond when you find the energy to do so.

So what has prompted this post? Well I’ve been chatting to Rebekah on and off for a while now. Today she posted about a new treatment she is trying to help her M.E. called Manual Lymphatic Drainage (MLD). If you want to check out her blog it’s http://freedomfrommeandfibro.blogspot.co.uk/ .

I had never heard of it before but have been told in the past that I have “lymphatic congestion”. My GP at the time laughed when I told him this….needless to say he isn’t my GP any more. My glands are constantly swollen and sore….could this MLD be a solution?

Within half an hour I was on google finding the nearest therapist and I’m now booked in for the end of the month. Rebekah has found a difference from it and that’s enough for me to give it a go. I’ll be honest with myself,as I have been with all the many other treatments I have tried over the years, and assess if it’s making any difference. The way I see it though it’s worth a shot.

So if you are at home, feeling low, lonely, helpless…if you have that little bit of energy, pop on to social media and chat to folk who are in similar circumstances. It can really help you feel less alone…and you never know you might just find something new to try.

Fingers crossed!

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Keep Smiling…

This week has been a challenge. Pain has escalated and I’ve had to up my painkillers, but even with that the pain just won’t diminish.

I’m used to pain. I reckon I’ve built up a fairly good tolerance to it. The thing is that in the past suffering from so much pain would have sent me into a dark place. I’d hide from the world and feel sorry for myself. I’d catastrophise and think “I’ll never get better”.

This week has been different. I’ve noticed a big change in the way I’ve dealt with the pain. Yes I’ve had some moans (just ask hubby) but I’ve also been a lot more positive. It hasn’t even felt like an effort, it’s just sort of happened. I’ve accepted that the pain is bad, that I need to up my painkillers and that I will need to sleep even more than usual.

It feels good to be able to deal with it. I’m proud of myself. To be honest it’s made it a bit easier to deal with the pain and its effects when I’m not surrounded by black clouds.

So I’m going to keep plodding on, staying positive and I’m sure I’ll get there in the end (wherever “there” might be).

Keep smiling….it sounds cheesy but it does help.

*signs off to snooze*

love,

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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

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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.

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Stop and Take Stock

Have you made any resolutions for 2013? I’ve never been very good at resolutions so this year I have made one … to be more positive! It isn’t exactly a particularly measurable resolution, like vowing to lose 2 stone, but it’s something that I know I have to do. How will I measure it? I’m not actually very sure, but it’s only day 9 and already I am catching myself being negative and dealing with it before it spirals out of control.

Recently I’ve been thinking about life. Life in general. Something heartbreakingly sad made me stop and take stock. As many of you know I like to tweet and blog. Over the past couple of years I have found some wonderful blogs. One such blog is multiplemummy.com. Sadly Kerry, aka multiplemummy, passed away last month. She was 30. She leaves her husband and three young children. I can’t even begin to imagine what her family are going through and I send them my deepest condolences and very best wishes at this incredibly sad time.

Life is fragile. We only have one shot at it and we never know when our journey will end. So if this is the way my life is to run, if I never get better, I am going to make the most of what I can do and stop focussing upon my weaknesses.

Rest in peace Kerry.

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Please take the time to look at the Just Giving page in memory of Kerry.

 

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!!!!!!

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Falling For The First Time

This is just a short post, perhaps even a random post. Today I decided to stick some music on (quietly) while lying in bed, I wasn’t enjoying the silence.

Anyway this song came on and I’ve been listening to it on repeat. You see this song was sort of my “anthem” if you like when I first started struggling with depression and anxiety. My hubby said “Rhoda, you have to listen to this, it’s you.” He was right. I can completely relate to this song. It might not mean much to you all but I thought I’d share it. There are two phrases that really stand out to me, I’ve highlighted them in bold. Although to be honest I could highlight the majority of this song!

Here we go…. Falling For The First Time – BNL

I’m so cool, too bad I’m a loser
I’m so smart, too bad I can’t get anything figured out
I’m so brave, too bad I’m a baby
I’m so fly, that’s probably why it
Feels just like I’m falling for the first time

I’m so green, it’s really amazing
I’m so clean, too bad I can’t get all the dirt off of me.
I’m so sane, it’s driving me crazy
It’s so strange, I can’t believe it
Feels just like I’m falling for the first time

Anyone perfect must be lying, anything easy has its cost
Anyone plain can be lovely, anyone loved can be lost
What if I lost my direction? What if I lost sense of time?
What if I nursed this infection? Maybe the worst is behind
It feels just like I’m falling for the first time
It feels just like I’m falling for the first time

I’m so chill, no wonder it’s freezing
I’m so still, I just can’t keep my fingers out of anything
I’m so thrilled to finally be failing
I’m so done, turn me over cause it
Feels just like I’m falling for the first time

Anything plain can be lovely, anything loved can be lost
Maybe I lost my direction, what if our love is the cost?
Anyone perfect must be lying, anything easy has its cost
Anyone plain can be lovely, anyone loved can be lost
What if I lost my direction? What if I lost sense of time?
What if I nursed this infection? Maybe the worst is behind

P.S. I just want to explain why I highlighted what if our love is the cost? After I posted this hubby asked what the phrase meant to me. Back at the start of all this I was scared that this illness was going to cost us our relationship. This has never occurred to hubby. It shows our different outlook – I’m always looking at the negative (or I was, I’m trying to get better!).

That phrase means something different to me now. Now it reminds me of that fear and I almost laugh at myself for doubting us. Our relationship has gone from strength to strength. We have gone through this together, side by side, and we will continue to do so. Our love has most definitely not been the cost…. in fact our love has grown even stronger.

Hope that makes sense!

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!