I've been trying to write this update for a few days now and failing miserably!
Here's the problem I have faced. I have been trying to dress up the last week into something that it hasn't been and because of that I've apparently been stripped of all my abilities to string a sentence together.
So, here it is.
The last few days have SUCKED. No silver lining, no brave face. They have SUCKED. There comes a time when rationality flies out the window and all you are left with is irrational emotion. There, I put it out there into the world. I, the lady who can create a positive out of just about any negative ran out of puff and just wallowed. I let myself feel every sucky feeling that my emotions had to throw at me and it left me somewhat exhausted. "I am a mess" was the only way I could sum it up this weekend! It felt like I started crying Friday night and stopped Monday morning.
Where did it all begin? Well, before heading off to London I opened a letter from the hospital giving me my next few appointments one of which was for an operation. CRAP BAGS. The last time I had an operation was well, shall we say traumatic? Much of the trauma I have pushed down, deep deep down at a safe distance from 'the feels'. If it's down deep enough it won't meet 'the feels'. It can just stay there, not being felt thank you very much! The news of the impending op however has bought it all flooding up and over the defences.
I thought all ops were off the table but alas no, I do remember the consultant saying he might want to have a look at my hips but I thought that was dependant on scan results. I don't know, maybe it was maybe it wasn't but whatever I am for the surgical table once more. Did I say CRAP BAGS?
Surgery for me isn't as simple as going in for a wee little op, no big deal. This hospital is over 4 hours away from home. 4 hours away from friends and family. We have to fork out to put my husband up in a hotel whilst I stay in hospital so he can visit me which will cost us lord knows how much. We also decided after my last op that regardless of when we would take our daughter up with us along with my mum so she could come to visit me during visiting hours as if we were just 20 minutes up the road. It's further expense but it's not fair on Amelia-Rose to make her stay in Dorset again. We have to make this all as easy as we can for her.
So, that was hanging over us when we made the trip up to London for a physio appointment, 3 hours on the train and a night in a hotel. My poor budget is left cowering somewhere in the corner. We did the meal deal that was available through the hotel we stayed in and I decided to go for it and eat, Tony and I so rarely get meals out etc and every now and again I just want to think 'I don't care how much it hurts or how sick it makes me I just want to enjoy a meal with my husband'... I made it through the starter but eating the main did really hurt then as I admitted defeat I had to wheel myself to the toilet where I was really sick. :-( I've got an appointment to go and see the gastro team urgently but from what I have read it's just another fun part of life with Hypmobility Syndrome.
We had decided to see a bit of London before my appointment which was nice although very cold! The sun was sunning though and there was a promise of spring in the air. There is a certain buzz in London, it's a nice place to be. (There's something I never thought I would write... I am not a city girl)
Turns out London is not wheelchair friendly though! Man did I feel every cobble, every break in the path, every kerb. Pain levels through the roof by the time we get to Hamley's I don't care who or what or how but I need out this chair NOW and I need some serious pain relief. Of course I still have a physio appointment to go to so there is no knocking myself out with pain relief (not that that works anyway! Thanks HMS) We must soldier on.
And then, surrounded by hundreds of busy people it dawns on me. Clo, my girl. You're sick. You're a woman in her 20's whose body is ripped with pain and, you're sick, No hiding, no dressing it up just laid out in front of me the honest truth that I spend so much of my time trying to overcome. When I try to do the things a woman of my age should be able to do with no trouble at all it becomes so glaring and obvious and I feel so very very disabled.
Being the 'over comer' the one who does everything to adapt, to enable herself when it dawns on you that actually, regardless of what you do if your body is put under enough of a strain it will make you pay for it, is a HUGE knock. I have been left pondering if I will ever regain control of my body. In the way that everybody else is able to do without even thinking of it as control! Like, for example, if you move your arm you're in control of that movement, it's not even a matter of control, you just... do it! I can't move any of my limbs without knowing if I will injure myself. When you have joints that dislocate you are aware of all of your movements, what's in line, what isn't, that pain, is it a sub lux or a full? There's constant doubt in your bodies ability to support itself.
Anyway, back to the matter in hand.We get to my appointment and my physio asks how the hydro went. The hydro that was cancelled in December, when I was told that the therapist had left and they weren't booking anymore appointments! My physio was A: Confused and B: Not happy. After some investigation we got told that, that phone call was a clerical error and I should have been doing hydro since December and since I haven't done any hydro I can't do physio!!
Can you imagine how annoyed I was? The expense and the pain and the leaving our daughter over night was all for what? NOTHING?! Are you kidding me? I can just about justify it all when I have an appointment, or even better, several appointments but seriously. When it's for nothing? It really hit me, the injustice of it all!
We decided to go and talk to the hospital PALS about the likelihood of getting some sort of financial support when I have my op (to help put Tony in a hotel so I don't have to be alone with no one to visit me, remember this op is taking place over 4 hours away from home) and as we expected were told that there is nowhere to turn. No government funding, no charity, nothing. The expense was ours to bare. Well, that was enough for me and I did something I very rarely do! I cried! How embarrassing! If I do ever cry it's in the privacy of my own home, never in public but there I was in my wheelchair in the hospital foyer crying!
We made our way back to the station and began our journey home.
That was Wednesday. Amelia-Rose had had a rather unfortunate accident at school that day and she was up all night Wednesday night in pain with her injury (I shan't say too much but lets just say she fell heavily with one leg either side of a triangular wooden climbing frame!) I had her in bed with me but every 2-3 minutes or so she was crying 'Mumma, Mumma it hurts'. I think I eventually got her settled into a deep (ish) sleep at about 5.30am.
There was no way I was sending her to school after such a restless night and felt that she needed to see the doctor just to check that she hadn't actually damaged her pelvis (which she hadn't) but the day after a London trip is always a hard day that I have to set aside as a rest day. Obviously that's never going to happen with a beautiful bouncy 5 year old so by Thursday night I was on my knees tired.
Just in time to wake up Friday morning with a blinding stomach and the arrival of my 'moon time' as some ladies refer to it.
I know I've mentioned this is previous posts but my cycle causes me a tremendous amount of pain. Instead of run of the mill stomach cramps my body reacts as if I am miscarrying and I have proper contractions, relentlessly for 48 hours. By the end of Friday night I was unable to cope with the pain anymore, when it gets this bad I stop being Chloe and am completely consumed. I was rocking and groaning (seriously, it's just like being in labour, the noises are involuntary!) with my head buried in the pillow, I had shut the bedroom door but Amelia-Rose walked in, I don't know how long she had been there because I was in such a ridiculous amount of pain but it upset her. At bedtime she wouldn't come back in the room without Tony and he wasn't allowed to leave. I had settled a bit by then and tried with all my strength to pull myself together for her sake but when you're in that much pain you aren't yourself anymore.
I was devastated that she had seen me in such a state, I try very hard to hide my discomfort from Amelia-Rose but she saw me at my worst.
That on top of everything else was the straw that broke the camels back and for the rest of the weekend the most insignificant thing would make me cry. One I started I just couldn't stop. Great big sobs of tears came frequently and I had to steal many moments to sneak off to shelter Amelia-Rose from my upset.
I am going to the doctors today to talk about a new pain management approach. I am throwing my hands up and being honest that I cannot continue to maintain the quality of life that I have achieved without looking at my meds. I hate that I have to take pain medication to be able to get up and 'live' but I do and I just need to accept that.
I spoke to Steve earlier (who is my musical partner) and even cried on the phone with him! I tell you, 'it's' hit me like a high speed train. I think all I can do at this moment in time is feel what it is I am feeling and wait patiently for it to pass, I can't fight this at the moment. It's too big.
Thursday, 6 March 2014
Monday, 24 February 2014
We have a fairy!
I got up and started cooking for the birthday brunch at 7.45am Sunday. I really wanted to make it special for my hubby and put my heart and soul into that brunch! It was a real feast! My parents and sister came too and we had a nice time.
I had a really late night Saturday night because I was baking the birthday cake and then getting up and getting going so early almost wiped me out by the time people were arriving. I was beyond putting a front on. I really did my best but man, the pain was off the scale! When my hip pains get really bad it creeps its way in to my lower back and feel like someone has slammed a vice either side of me and is crushing my back.
After brunch the three of us played some games and after that I took our daughter into the kitchen to make a fairy house.
Saturday afternoon I was called into the lounge and our daughter had built a little structure with a strawberry dangling off it and I lovely sign that said 'Fairies welcome' and she asked me to write . Please write you name here' and we left it out.
Sunday morning before she came downstairs I ate the strawberry and wrote in the tiniest writing 'Arabelle' and oh my goodness she was beside herself!
Her sense of excitement was enormous! I had an old box which we turned inside out and then we got to decorating it.
When we do crafts I let A-R take the lead to encourage her own original creativity, I was blown away with some of her ideas for the house! She decided that she wanted to stick a toilet roll on top as a chimney but wasn't sure how to attach it, after a few minutes of looking at the materials she had to hand she declared she was going to stick some tissue paper underneath the bottom of the toilet roll and wrap it upwards so there was a flat base to stick to the roof. I was very impressed! I don't know if I would have thought of that! I was thinking we could stick it on with cello tape some going up the tube and some down on the box.
Arabelle left her another tiny note saying thank you for her wonderful new home and said she would like to bring her a gift from fairyland so I bought a small crystal today from one of the shops.
We live in a society now that doesn't seem to openly encourage children's imaginations anymore. Most of the toys they get now a days are so realistic it leaves no room for 'playing pretend'. I think there is a certain sadness about that!
Children should be encouraged to explore their wonderful imaginations, to see their world the way they see it and not have that stamped out by a logical society.
We are off to London AGAIN tomorrow for another hospital appointment. We will go up from train tomorrow and come home by train Wednesday evening which will probably wipe me out for the rest of the week.
I had some more appointment dates arrive in the post today. One of which is for surgery which has immediately made me feel very anxious! The last stay in hospital I had was horrendous, there is no other word for it! I have 100% faith in my consultant but the idea of being even further from home then I was last time (almost 5 hours) and once again having to travel home days after hip surgery fills me with dread! I am going to look into getting patient transport, last time I travelled home in the back of the car (after fairly major hip surgery) and whilst I don't remember much of the journey (because it was so traumatic) Tony said I wailed and grunty screamed most of the way home. All I remember is biting the head rest! Every turn, every stop, every acceleration and bump in the road sent pain ripping through me.
I also have no idea how we will pay for it. Obviously the hospital bit is free but it will mean Tony has to stay in a hotel the whole time I am in hospital and will need to eat out etc. I couldn't bare for him not to be with me. I know I would find it incredibly difficult to know I was in London completely alone but of course London hotel prices are not exactly cheap! I think I would also want to take A-R up with us which would mean taking my mum too so she could watch her when Tony was up at the hospital. I think it is important for A-R to be able to come and visit me rather then like last year us going off for what we thought would be two nights and being gone longer then arriving home in a much worse state then when I left! It is all extra expense though! That would mean two hotel rooms and of course taxi rates to and from the hospital every day. Maybe even twice a day and let me tell you London cabs are not cheap! The week before last when we were there it cost us £30 for a 3 mile trip because the traffic was so bad.
I've just got to hand this one over to God and trust something will come along to provide for us. The constant up and down to London (although we get our train money back) is really hitting our budget. We're suddenly having to find almost £200 extra each trip we make to London and this month we've gone twice. It's robbing Peter to pay Paul!
Still, we are blessed to live in a country that has free healthcare and I will never take that part for granted!
Signing off now! I had a really restless night last night and it feels much later then it actually is!
Blessings all x
I had a really late night Saturday night because I was baking the birthday cake and then getting up and getting going so early almost wiped me out by the time people were arriving. I was beyond putting a front on. I really did my best but man, the pain was off the scale! When my hip pains get really bad it creeps its way in to my lower back and feel like someone has slammed a vice either side of me and is crushing my back.
After brunch the three of us played some games and after that I took our daughter into the kitchen to make a fairy house.
Saturday afternoon I was called into the lounge and our daughter had built a little structure with a strawberry dangling off it and I lovely sign that said 'Fairies welcome' and she asked me to write . Please write you name here' and we left it out.
Sunday morning before she came downstairs I ate the strawberry and wrote in the tiniest writing 'Arabelle' and oh my goodness she was beside herself!
Her sense of excitement was enormous! I had an old box which we turned inside out and then we got to decorating it.
When we do crafts I let A-R take the lead to encourage her own original creativity, I was blown away with some of her ideas for the house! She decided that she wanted to stick a toilet roll on top as a chimney but wasn't sure how to attach it, after a few minutes of looking at the materials she had to hand she declared she was going to stick some tissue paper underneath the bottom of the toilet roll and wrap it upwards so there was a flat base to stick to the roof. I was very impressed! I don't know if I would have thought of that! I was thinking we could stick it on with cello tape some going up the tube and some down on the box.
Arabelle left her another tiny note saying thank you for her wonderful new home and said she would like to bring her a gift from fairyland so I bought a small crystal today from one of the shops.
We live in a society now that doesn't seem to openly encourage children's imaginations anymore. Most of the toys they get now a days are so realistic it leaves no room for 'playing pretend'. I think there is a certain sadness about that!
Children should be encouraged to explore their wonderful imaginations, to see their world the way they see it and not have that stamped out by a logical society.
We are off to London AGAIN tomorrow for another hospital appointment. We will go up from train tomorrow and come home by train Wednesday evening which will probably wipe me out for the rest of the week.
I had some more appointment dates arrive in the post today. One of which is for surgery which has immediately made me feel very anxious! The last stay in hospital I had was horrendous, there is no other word for it! I have 100% faith in my consultant but the idea of being even further from home then I was last time (almost 5 hours) and once again having to travel home days after hip surgery fills me with dread! I am going to look into getting patient transport, last time I travelled home in the back of the car (after fairly major hip surgery) and whilst I don't remember much of the journey (because it was so traumatic) Tony said I wailed and grunty screamed most of the way home. All I remember is biting the head rest! Every turn, every stop, every acceleration and bump in the road sent pain ripping through me.
I also have no idea how we will pay for it. Obviously the hospital bit is free but it will mean Tony has to stay in a hotel the whole time I am in hospital and will need to eat out etc. I couldn't bare for him not to be with me. I know I would find it incredibly difficult to know I was in London completely alone but of course London hotel prices are not exactly cheap! I think I would also want to take A-R up with us which would mean taking my mum too so she could watch her when Tony was up at the hospital. I think it is important for A-R to be able to come and visit me rather then like last year us going off for what we thought would be two nights and being gone longer then arriving home in a much worse state then when I left! It is all extra expense though! That would mean two hotel rooms and of course taxi rates to and from the hospital every day. Maybe even twice a day and let me tell you London cabs are not cheap! The week before last when we were there it cost us £30 for a 3 mile trip because the traffic was so bad.
I've just got to hand this one over to God and trust something will come along to provide for us. The constant up and down to London (although we get our train money back) is really hitting our budget. We're suddenly having to find almost £200 extra each trip we make to London and this month we've gone twice. It's robbing Peter to pay Paul!
Still, we are blessed to live in a country that has free healthcare and I will never take that part for granted!
Signing off now! I had a really restless night last night and it feels much later then it actually is!
Blessings all x
Saturday, 22 February 2014
To the one I love
I tell you everyday, several times a day that I love you and yet I don't often share what that means to me! 'I love you' is a statement we make to each other all the time and in those words so few we say so much.
The first time I met you something deep within me knew I had found my match. You were the missing piece of the puzzle. I knew I would spend the rest of my life with you. It wasn't part of my plan to fall so completely in love so young and we had a lot to prove but I would never be without you now!!
We grew together. There we were, two peas in a pod who, for all intense and purposes should never have worked. But we did work and we still do. You are my blessing.
Through your love for me you taught me to love myself. You cared for me and nurtured me, you made me laugh like no one before you could, you make me laugh so much my face hurts! You pandered to my goofy side and laughed at me as well as alongside me! You made me so proud to have you as my own.
Our spirits became so entwined that I am still uncertain where I end and you begin.
One sunny spring day with the realisation a certain something I had been waiting for hadn't arrived I pee'd on a stick! Imagine my frustration as I waited for 7 hours for you to get home from work so I could share our news. What a shock. What a wonderful, blissful shock.
We were to be parents!
Of course our world came crashing down when we were told that we would never meet our little creation. You took the week off work whilst we waited for the pregnancy to end and never before has someone else's silence spoken so loudly to me. We were sad to the core and yet we never turned on each other, this was a battle we would fight together.
Thank goodness we did because our little mass of cells defied the doctors and never left, in fact, it grew as did my stomach! A baby girl was on her way.
What next, where was our journey going? We spoke of marriage and before I knew it I was planning our wedding! What a beautiful two days they were! Only you and I could manage to make a wedding celebration last two days! I was higher then high, my heart sung constantly for those two days. As we made our vows together our baby danced in my tummy the whole time. As if she was celebrating our union with us!
The last few months of my pregnancy on reflection, well, I can only salute you for dealing so well with those darned pregnancy hormones! I remember you laughing out loud one day, your silly belly laugh at me as you hugged me and comforted when I cried 'because I didn't know why I was crying' You never belittled me or made me feel unreasonable you just quietly walked along side me as I got larger and larger!
When I spoke of hypno birthing you never laughed at me, you never told me I was crazy! You stood behind me 100% as I prepared my body for the biggest event my body would ever encounter!
I remember the night I went into labour like it was yesterday. We were sat in bed and you'd made me my favourite late pregnancy treat... honey on toast. I felt an electric spark rip through my tummy and jump out of bed in alarm, I got back in bed but as soon as I settled again I had another electric shock!
It was such an odd sensation I remember laughing, and you laughing at me. It was you who suggested that maybe I was actually in labour! The contractions came thick and fast from that first one! You ran me a bath and massaged my back as I sat like a walrus in the bath!
In the third hour I felt like I needed to leave for the birthing unit. You comforted me through my disappointment because I felt that I needed to go in so soon into my labour. It had been my intention to do at least half of the labour at home. Little did I know I was over half way through! Our girl may have been 14 days late but when she was coming, she was coming!
The only experience missing was the infamous waters breaking! I don't know a pregnant woman who doesn't fear them going in public! We left the house at just after 1.30am and didn't hit a single red light! You spoke calmly to me on the small journey and Take That's 'Today this could be the greatest day of our life' played on the radio! To this day when I hear that song it sends me back to that little red car and remembering to breathe!
When we arrived at the unit you held me hand as I was examined by the midwife, we were over three hours in now and the contractions had come every 2 minutes from the first one, it was intense but I never felt scared.
After the exam you lent down to put my slippers on and bore the brunt of my waters! The look on your face! 'Aarr... nice' you said as I laughed at you! I couldn't have planned it if I had tried! After the clean up you bent to do the other slipper and got the second wave! I know you believe you wouldn't have luck if you didn't have bad luck. Bless you.
You were so calm and collected and supported me every step (or should that be push) of the way, in fact, you were so calm the midwife was happy to let you take control, she even thought you were a midwife! You were so content in your role of cheerleader.
In the last hour just as my body was ready to push I told you I loved you and the midwife said she had never heard a woman telling her husband she loved him so far into labour. But how could I be angry with you when what we were doing was so amazing, this was the beginning of our family and all I felt for you was love.
The moment Amelia-Rose came into the world I looked into your eyes and have never seen someone in such ecstasy! From that instant I knew she would be a Daddy's girl. In the years since my heart skips a little beat when you call us 'Your girls' . It makes me feel so protected, I know you will always do everything you can to provide for us in all aspects.
You are every bit the father I knew you would be. In first weeks of Amelia-Rose's birth you catered to my every need, even the ones I didn't know I had! There was endless cups of decaf coffee and toast... do much toast! I didn't have to do night feeds alone in those first few weeks, you would sit awake with me even though there was nothing you could do just to keep me company and to spend extra time watching our gorgeous baby.
You adored Amelia-Rose and that adoration made me adore you even more!
When we relocated to Dorset 10 months later and you continued to work 2 and a half hours away for 24 hours three of four times a week I cannot lie and say they were easy months. We had some pretty big cracks which on reflection I think were caused by the unrest of you being away so much, it was easier to bicker then to miss each other and we came close to losing everything we had together. In that time you taught me you could love someone unconditionally but not always like them very much! 'o)
We knew we had to walk away or try to heal... thank god we stuck it out. We talked and we listened, listened and we talked.
There was much to be rebuilt but we did it and what we built this time was even stronger then before. We learned so much about each other in that time and one thing was clear, When it came to our future we were resilient and we were both in it for the long run!
Seeing you interact with Amelia-Rose makes my heart swell. You worked so hard so I could stay at home and be a full time mother, you found a job more locally so the commute wouldn't be an issue anymore. When money got tight and I considered looking for a job you were insistent that it was your job to financially provide and it was more important for me to enjoy the special young years. The years you can't get back as much as you try to slow them down! That gift will always be priceless to me and I don't thank you enough for such a glorious opportunity.
When I got sick you instantly took over all the house work without ever being asked to do so. Of course then we had no idea what a long road we were on but your constant support never wavered. You let me feel everything I needed to feel and never once belittled what I was going through. You gave me strength and I never heard you complain. Not once. I still haven't even almost two years on!
As I lost myself you kept hold of me. As I grew snappy and quick to tears because of the pain I was in you didn't hold it against me. When I felt angry and was rude to you, you would absorb it
without mimicking my behaviour. Even before I couldn't see it in myself yet you could see that I was grieving. As I struggled to find the words to describe what the pain was doing to me you were always one step ahead. I have never known loneliness like I experienced in those months when I was housebound but I was never truly alone. You were always there.
You insist I wake you up if I am in too much pain over night just so you can sit with me and if I don't, but you can tell it has been a rough night you tell me off! So intent on me not going through this alone.
Although I have struggled adjusting to being 'disabled' and the impact that has had on my confidence you let me know everyday how beautiful and sexy you think I am. Everyday. Without fail. I am so abundantly blessed, rest assured I do not take it for granted. I know everything I have achieved in the past two years I couldn't have done with out you. You enable me.
I know it can't be easy living with me when my pain is at its maximum level, I am grumpy and get upset over silly things but I am never angry with you. I am never frustrated with you, it is never you that makes me cry. I wish I could be the woman I was before, so rarely ever grumpy! I will get to that place again, it won' be the same place, we cannot go backwards but we will go forwards, to a place we can't even dream about. We are learning together how to live with this illness and I know things will get better, I will learn to manage it better. We will learn to manage it better.
When I say I love you I don't just say the words. Those words are filled with every laugh, every inside joke, every night, every morning, every tear, every experience, every day, every road, everything we have gone through together and an excited spark at what is yet to come.
I love you Mr L.
The first time I met you something deep within me knew I had found my match. You were the missing piece of the puzzle. I knew I would spend the rest of my life with you. It wasn't part of my plan to fall so completely in love so young and we had a lot to prove but I would never be without you now!!
We grew together. There we were, two peas in a pod who, for all intense and purposes should never have worked. But we did work and we still do. You are my blessing.
Through your love for me you taught me to love myself. You cared for me and nurtured me, you made me laugh like no one before you could, you make me laugh so much my face hurts! You pandered to my goofy side and laughed at me as well as alongside me! You made me so proud to have you as my own.
Our spirits became so entwined that I am still uncertain where I end and you begin.
One sunny spring day with the realisation a certain something I had been waiting for hadn't arrived I pee'd on a stick! Imagine my frustration as I waited for 7 hours for you to get home from work so I could share our news. What a shock. What a wonderful, blissful shock.
We were to be parents!
Of course our world came crashing down when we were told that we would never meet our little creation. You took the week off work whilst we waited for the pregnancy to end and never before has someone else's silence spoken so loudly to me. We were sad to the core and yet we never turned on each other, this was a battle we would fight together.
Thank goodness we did because our little mass of cells defied the doctors and never left, in fact, it grew as did my stomach! A baby girl was on her way.
What next, where was our journey going? We spoke of marriage and before I knew it I was planning our wedding! What a beautiful two days they were! Only you and I could manage to make a wedding celebration last two days! I was higher then high, my heart sung constantly for those two days. As we made our vows together our baby danced in my tummy the whole time. As if she was celebrating our union with us!
The last few months of my pregnancy on reflection, well, I can only salute you for dealing so well with those darned pregnancy hormones! I remember you laughing out loud one day, your silly belly laugh at me as you hugged me and comforted when I cried 'because I didn't know why I was crying' You never belittled me or made me feel unreasonable you just quietly walked along side me as I got larger and larger!
When I spoke of hypno birthing you never laughed at me, you never told me I was crazy! You stood behind me 100% as I prepared my body for the biggest event my body would ever encounter!
I remember the night I went into labour like it was yesterday. We were sat in bed and you'd made me my favourite late pregnancy treat... honey on toast. I felt an electric spark rip through my tummy and jump out of bed in alarm, I got back in bed but as soon as I settled again I had another electric shock!
It was such an odd sensation I remember laughing, and you laughing at me. It was you who suggested that maybe I was actually in labour! The contractions came thick and fast from that first one! You ran me a bath and massaged my back as I sat like a walrus in the bath!
In the third hour I felt like I needed to leave for the birthing unit. You comforted me through my disappointment because I felt that I needed to go in so soon into my labour. It had been my intention to do at least half of the labour at home. Little did I know I was over half way through! Our girl may have been 14 days late but when she was coming, she was coming!
The only experience missing was the infamous waters breaking! I don't know a pregnant woman who doesn't fear them going in public! We left the house at just after 1.30am and didn't hit a single red light! You spoke calmly to me on the small journey and Take That's 'Today this could be the greatest day of our life' played on the radio! To this day when I hear that song it sends me back to that little red car and remembering to breathe!
When we arrived at the unit you held me hand as I was examined by the midwife, we were over three hours in now and the contractions had come every 2 minutes from the first one, it was intense but I never felt scared.
After the exam you lent down to put my slippers on and bore the brunt of my waters! The look on your face! 'Aarr... nice' you said as I laughed at you! I couldn't have planned it if I had tried! After the clean up you bent to do the other slipper and got the second wave! I know you believe you wouldn't have luck if you didn't have bad luck. Bless you.
You were so calm and collected and supported me every step (or should that be push) of the way, in fact, you were so calm the midwife was happy to let you take control, she even thought you were a midwife! You were so content in your role of cheerleader.
In the last hour just as my body was ready to push I told you I loved you and the midwife said she had never heard a woman telling her husband she loved him so far into labour. But how could I be angry with you when what we were doing was so amazing, this was the beginning of our family and all I felt for you was love.
The moment Amelia-Rose came into the world I looked into your eyes and have never seen someone in such ecstasy! From that instant I knew she would be a Daddy's girl. In the years since my heart skips a little beat when you call us 'Your girls' . It makes me feel so protected, I know you will always do everything you can to provide for us in all aspects.
You are every bit the father I knew you would be. In first weeks of Amelia-Rose's birth you catered to my every need, even the ones I didn't know I had! There was endless cups of decaf coffee and toast... do much toast! I didn't have to do night feeds alone in those first few weeks, you would sit awake with me even though there was nothing you could do just to keep me company and to spend extra time watching our gorgeous baby.
You adored Amelia-Rose and that adoration made me adore you even more!
When we relocated to Dorset 10 months later and you continued to work 2 and a half hours away for 24 hours three of four times a week I cannot lie and say they were easy months. We had some pretty big cracks which on reflection I think were caused by the unrest of you being away so much, it was easier to bicker then to miss each other and we came close to losing everything we had together. In that time you taught me you could love someone unconditionally but not always like them very much! 'o)
We knew we had to walk away or try to heal... thank god we stuck it out. We talked and we listened, listened and we talked.
There was much to be rebuilt but we did it and what we built this time was even stronger then before. We learned so much about each other in that time and one thing was clear, When it came to our future we were resilient and we were both in it for the long run!
Seeing you interact with Amelia-Rose makes my heart swell. You worked so hard so I could stay at home and be a full time mother, you found a job more locally so the commute wouldn't be an issue anymore. When money got tight and I considered looking for a job you were insistent that it was your job to financially provide and it was more important for me to enjoy the special young years. The years you can't get back as much as you try to slow them down! That gift will always be priceless to me and I don't thank you enough for such a glorious opportunity.
When I got sick you instantly took over all the house work without ever being asked to do so. Of course then we had no idea what a long road we were on but your constant support never wavered. You let me feel everything I needed to feel and never once belittled what I was going through. You gave me strength and I never heard you complain. Not once. I still haven't even almost two years on!
As I lost myself you kept hold of me. As I grew snappy and quick to tears because of the pain I was in you didn't hold it against me. When I felt angry and was rude to you, you would absorb it
without mimicking my behaviour. Even before I couldn't see it in myself yet you could see that I was grieving. As I struggled to find the words to describe what the pain was doing to me you were always one step ahead. I have never known loneliness like I experienced in those months when I was housebound but I was never truly alone. You were always there.
You insist I wake you up if I am in too much pain over night just so you can sit with me and if I don't, but you can tell it has been a rough night you tell me off! So intent on me not going through this alone.
Although I have struggled adjusting to being 'disabled' and the impact that has had on my confidence you let me know everyday how beautiful and sexy you think I am. Everyday. Without fail. I am so abundantly blessed, rest assured I do not take it for granted. I know everything I have achieved in the past two years I couldn't have done with out you. You enable me.
I know it can't be easy living with me when my pain is at its maximum level, I am grumpy and get upset over silly things but I am never angry with you. I am never frustrated with you, it is never you that makes me cry. I wish I could be the woman I was before, so rarely ever grumpy! I will get to that place again, it won' be the same place, we cannot go backwards but we will go forwards, to a place we can't even dream about. We are learning together how to live with this illness and I know things will get better, I will learn to manage it better. We will learn to manage it better.
When I say I love you I don't just say the words. Those words are filled with every laugh, every inside joke, every night, every morning, every tear, every experience, every day, every road, everything we have gone through together and an excited spark at what is yet to come.
I love you Mr L.
Friday, 14 February 2014
A week on already...
I can hardly believe that this time last week (9.24pm as I write) we had just gone on stage for our album launch gig. This week has flown by in a blur and I'm convinced it is Tuesday or Wednesday!
I am thrilled to have Amelia-Rose home for the whole week (school break! Yahoo!) but I feel a tad under prepared!
I normally make sure I plan lots of things to do for school holidays but so far I have nothing up my sleeve! We were talking at bedtime about what she would like to do and so far we have that she'd like a write a 'proper book', make up a story and do the pictures etc. then she asked if we could laminate it and tie it up with ribbon so the pages don't fall out!
I adore how drawn Amelia-Rose is to English, she loves writing stories, poems and 'songs'. As a little girl I LOVED English as a subject. I've always been drawn to how one can express oneself through the written word. I think if you can develop a real pleasure from writing it can be like a key that unlocks a whole new part of life.
Before I had Amelia-Rose I had started to write children's books. I've still got them all on file and would love to do something with them one day. I should share them with Amelia-Rose this half term. If nothing else I know she'll be honest with me!
I was intending to write about the hospital appointments in London tonight but I am just too tired and have had an awful tummy ache since about 3pm this afternoon. It took me to my panic pain stations earlier where the pain gets so prominent I can't do anything to ease it even just a little. It's such a silly thing to say the pain can scare me sometimes but it does, if I can rationalise the reason for it I can manage even the worst pain but when I don't know why it is happening internally I get very on edge. This stomach pain does not feel like the pains and spasms I experience normally. I suppose that just makes me human... with a fear for the unknown!
Blessings x x
I am thrilled to have Amelia-Rose home for the whole week (school break! Yahoo!) but I feel a tad under prepared!
I normally make sure I plan lots of things to do for school holidays but so far I have nothing up my sleeve! We were talking at bedtime about what she would like to do and so far we have that she'd like a write a 'proper book', make up a story and do the pictures etc. then she asked if we could laminate it and tie it up with ribbon so the pages don't fall out!
I adore how drawn Amelia-Rose is to English, she loves writing stories, poems and 'songs'. As a little girl I LOVED English as a subject. I've always been drawn to how one can express oneself through the written word. I think if you can develop a real pleasure from writing it can be like a key that unlocks a whole new part of life.
Before I had Amelia-Rose I had started to write children's books. I've still got them all on file and would love to do something with them one day. I should share them with Amelia-Rose this half term. If nothing else I know she'll be honest with me!
I was intending to write about the hospital appointments in London tonight but I am just too tired and have had an awful tummy ache since about 3pm this afternoon. It took me to my panic pain stations earlier where the pain gets so prominent I can't do anything to ease it even just a little. It's such a silly thing to say the pain can scare me sometimes but it does, if I can rationalise the reason for it I can manage even the worst pain but when I don't know why it is happening internally I get very on edge. This stomach pain does not feel like the pains and spasms I experience normally. I suppose that just makes me human... with a fear for the unknown!
Blessings x x
Tuesday, 11 February 2014
We did it!
Big things are happening in my life at the moment and it's an odd sort of situation where I am moving forward yet have this lingering grip of pain holding on for dear life! When I consider what my body is going through at the moment the reality of that is so far from what is going on in the rest of my life it's unclear how to match the two up!
The week before last the local paper did a story featuring the album launch and my illness. It was nerve wracking doing the interview because I so rarely talk openly about the reality of living with Hypermobility Syndrome but I felt I owed it to everyone diagnosed not to down play my symptoms and just be really honest.
The paper did a great job in captivating my general positivity but were also very to the point in writing about the symptoms. I was really pleased with the article. It was a good message.
Then after that Steve and I went off to the local radio to do an interview which will be aired today. They are also going to play a song off the album too. There are no words to describe how wonderfully surreal that feels!! A song I jointly wrote and performed... on the radio? WHAT?
It feels like everything I have 'been through' has been bringing me to this place. I am under no illusions that the struggles are over but I feel like I have enough strength in me now to soldier on.
Gosh that sounds so incredibly cheesy but something happened Friday night during the gig. I feel like I came home. I don't like to focus on the negative things but it's not been the easiest of lives! I've always had this strange sense though that in the end it would all work out, that I had a 'something' to fulfil. I've never felt like what I was going through was by any means the meaning of life. I guess I have always rest assured that things could and would change and retained this sense of 'Clo' that keeps me silly and positive and determined. I still couldn't tell you what the purpose of my life will be (I've never been very good at knowing where I'm going!) but I feel like I am on the right tracks, I believe when the time is right it will be revealed to me. I have to pay attention to what is being said around me and people are buzzing. Something is shifting.
I don't really know if I can put Friday into words, Nor can I ever write truly how much I appreciate the work of everyone involved to make the night happen!
We were able to portray how well we've all gelled in the rehearsals up on stage and from what people have said we knocked it out the park. The response from people has been overwhelming. My sister said 'Tonight you became the person you were always meant to be', another friend commented 'I've never seen anyone so relaxed on stage before'. My parents were beside themselves with pride. It really feels like something special happened Friday. It completely smashed all my expectations of how well it 'may' go!!
I feel like this whole experience has helped me learn to manage my symptoms better. I think I've reached a new level of listening to my body and taking cues from it. I am getting better at putting my body first and when it needs rest I rest. When it seems a soak in the bath will help I get in the bath. I may have finally realised how to live successfully along side it rather then seeing it as his absurd 'thing' that just hurts me all the time!
So symptoms update;
Still being sick if and when I attempt solid food.
Pain in my oesophagus when I swallow, sometimes this even applies to water (ow)
Back ache, oh the back ache!
Thumb on my right hand is really swollen at the minute, I must continue to persevere with the turmeric tea!
The middle finger on my right hand seems to have improved somewhat ,in terms of movement.
Hips, well, they are my hips, how do I describe my hips? Clicking, popping, dislocating and very sore. I've discovered a very hot wheat bag in the groan is helping with the hip pain. Possibly because it's burning hot on the skin so takes my mind off it but hey... it's a break!
I am juicing loads which is having an amazingly positive effect on my fatigue! I am also drinking turmeric tea a few times a day and I must say I do think it's beginning to have an effect on my 'bone' pain. The constant ache in my joints does seem to be more manageable. It's less invasive on my mind.
To look after my voice (which is a muscle after all) I am singing everyday and drinking buckets of lemon and ginger.
In terms of what I put into my body I think I must be the healthiest person I know. I cannot imagine how much worse my symptoms would be if I was inactive in the 'fight' against the syndrome. I don't like the word fight, some day it feels like a fight but I don't want it to be a fight. I want it to be a courtship. Where we politely acknowledge each other but don't dictate each others fate!
Off to London for hospital appointments this week, I normally find it so stressful but instead of going there and back in a day we've decided to go up the day before stay over night and then we don't have to get up at lord knows what time of the morning!
I'm not sure we will learn anything new from these appointments but we'll see!
The week before last the local paper did a story featuring the album launch and my illness. It was nerve wracking doing the interview because I so rarely talk openly about the reality of living with Hypermobility Syndrome but I felt I owed it to everyone diagnosed not to down play my symptoms and just be really honest.
The paper did a great job in captivating my general positivity but were also very to the point in writing about the symptoms. I was really pleased with the article. It was a good message.
Then after that Steve and I went off to the local radio to do an interview which will be aired today. They are also going to play a song off the album too. There are no words to describe how wonderfully surreal that feels!! A song I jointly wrote and performed... on the radio? WHAT?
It feels like everything I have 'been through' has been bringing me to this place. I am under no illusions that the struggles are over but I feel like I have enough strength in me now to soldier on.
Gosh that sounds so incredibly cheesy but something happened Friday night during the gig. I feel like I came home. I don't like to focus on the negative things but it's not been the easiest of lives! I've always had this strange sense though that in the end it would all work out, that I had a 'something' to fulfil. I've never felt like what I was going through was by any means the meaning of life. I guess I have always rest assured that things could and would change and retained this sense of 'Clo' that keeps me silly and positive and determined. I still couldn't tell you what the purpose of my life will be (I've never been very good at knowing where I'm going!) but I feel like I am on the right tracks, I believe when the time is right it will be revealed to me. I have to pay attention to what is being said around me and people are buzzing. Something is shifting.
I don't really know if I can put Friday into words, Nor can I ever write truly how much I appreciate the work of everyone involved to make the night happen!
We were able to portray how well we've all gelled in the rehearsals up on stage and from what people have said we knocked it out the park. The response from people has been overwhelming. My sister said 'Tonight you became the person you were always meant to be', another friend commented 'I've never seen anyone so relaxed on stage before'. My parents were beside themselves with pride. It really feels like something special happened Friday. It completely smashed all my expectations of how well it 'may' go!!
I feel like this whole experience has helped me learn to manage my symptoms better. I think I've reached a new level of listening to my body and taking cues from it. I am getting better at putting my body first and when it needs rest I rest. When it seems a soak in the bath will help I get in the bath. I may have finally realised how to live successfully along side it rather then seeing it as his absurd 'thing' that just hurts me all the time!
So symptoms update;
Still being sick if and when I attempt solid food.
Pain in my oesophagus when I swallow, sometimes this even applies to water (ow)
Back ache, oh the back ache!
Thumb on my right hand is really swollen at the minute, I must continue to persevere with the turmeric tea!
The middle finger on my right hand seems to have improved somewhat ,in terms of movement.
Hips, well, they are my hips, how do I describe my hips? Clicking, popping, dislocating and very sore. I've discovered a very hot wheat bag in the groan is helping with the hip pain. Possibly because it's burning hot on the skin so takes my mind off it but hey... it's a break!
I am juicing loads which is having an amazingly positive effect on my fatigue! I am also drinking turmeric tea a few times a day and I must say I do think it's beginning to have an effect on my 'bone' pain. The constant ache in my joints does seem to be more manageable. It's less invasive on my mind.
To look after my voice (which is a muscle after all) I am singing everyday and drinking buckets of lemon and ginger.
In terms of what I put into my body I think I must be the healthiest person I know. I cannot imagine how much worse my symptoms would be if I was inactive in the 'fight' against the syndrome. I don't like the word fight, some day it feels like a fight but I don't want it to be a fight. I want it to be a courtship. Where we politely acknowledge each other but don't dictate each others fate!
Off to London for hospital appointments this week, I normally find it so stressful but instead of going there and back in a day we've decided to go up the day before stay over night and then we don't have to get up at lord knows what time of the morning!
I'm not sure we will learn anything new from these appointments but we'll see!
Wednesday, 15 January 2014
The day Hello Kitty came to party
So the past 2 weeks have been all about my daughter's fifth birthday party! This year she asked for a Hello Kitty theme and asked that everything was PINK!
Up until about 2 months ago my daughter hasn't liked 'Pink', proudly telling people she is not a 'pinkish' girl so this new pink stage has been a bit of a revelation to us all.
I love birthdays, I always have. When I was a little girl I would stretch my birth'day' as long as I could! Just a day? Oh no! Lets go for the whole weekend!
Something that I am really having to work on is setting myself new realistic physical expectations. I have always been very proud of my make it yourself attitude and it meant for the first three years as a wife and mother our meals were from scratch and my daughter and I made most the gifts that we gave. I loved the lifestyle. Of course, when I became disabled things had to change and it's possibly the thing I struggle with the most. It makes me feel completely inadequate!
My husband now does a lot of the cooking because it is difficult for me to prepare food and I really miss it. I will raise the blood pressure of feminists around the world now but we had a very traditional marriage. I was the home keeper and my husband was the bread winner. I was very fortunate that even before my illness my husband has always been hands on with house work on his days off (helping out where he could) but cooking was always my territory.
I take great pride in cooking nice meals for the people I love. As a little girl I use to plan elaborate menus and invite all of my extended family over for 'dinner parties'. For me cooking is about love, so you can imagine how difficult I have found it to let that go. (This is one of the things we have addressed with the occupational therapists. How to enable me to be able to cook completely independently again. Hoora!!)
Rationally I can say to myself 'All they need is your love and your time' and yet the fact that I can't 'do' as much as I use to is still a very sore wound for me. I am aware of it though which I think is positive and I am working on it. At least I've identified the sore spot!
It's not a great personality trait having your self worth (for want of a better phrase!) caught up in what you can physically do for other people but A; Before the disability I had no idea because I was able to give as much of myself as I wanted! and B; I do know now and it's explained a lot of past experiences to me and I fully intend upon growing as a person knowing this is within me. I guess it's all part of being kind to myself. (See previous blog!)
Urgh, I feel like this is sounding like I am a real downer on myself and it isn't meant to at all! I am not a self loathing person, I just, I feel my best when I am helping someone. I like to give to people and I suppose, what I am trying to explain is that it's only since I have become disabled that I've realised that that want to give to other people all the time is a bit wrapped up with how I see myself. In terms of being a useful human being etc. Man I have gone WAY off subject...
Getting back to the party...
Pre party as I looked at the food I had prepared and the decorations I had bought I simply thought "I haven't done enough" but when I saw how beautiful the hall looked and how happy my daughter was I was able to appreciate my hard work. (And the hard work of others. It wouldn't have been made possible without my amazing family and two friends who actually put all the decorations up for me!)
I also did something that I have never done before. I put myself in my wheelchair. Going in my wheelchair is normally only an option because I simply cannot do what it is I need to do without it (like being out in public in a non mobility scooter friendly place) but on this occasion I decided the best place for me to be was indeed in my wheelchair. Call it self preservation. I knew, if I didn't put my butt in that chair I would have over done it and the only person that pays for me over doing it is me. Well, in a physical sense anyway.
After the party I had a long soak in the bath and when I was reflecting upon the day it occurred to me that it was the first time I had felt comfortable in my wheelchair. Normally I HATE being in my wheelchair. The first time I went out in it I had a panic attack (after 6 years of not having one!) and it near enough broke my heart to see the reflection in shop windows of a woman sat in a wheelchair but here we are, 22 months later and I actually felt like 'me'. I was relaxed and I enjoyed myself. It was a HUGE victory. Huge. And even now a few days on it still feels pretty darn good.
I am so good at putting on the 'I cope with this so well' face but in this case I actually really did! It was such a fun party! I didn't feel like I was putting on a show or a brave face at all. I just genuinely had a blast.
I set up four tables each with a different activity on so the children were spilt into groups and then with an adult helper moved their way around the various activities so that everyone got a turn at everything and we weren't left with children running wildly around the room!
Table one was the toilet roll game! Using toilet roll you make yourself (or a nominated person in your team) an outfit to wear. The children had an absolute BLAST and we will definitely be doing this again! Even the mums couldn't resist getting involved!
Table two was the tray memory game. You place various items on a tray and cover it with a tea towel. You then do a sneaky swipe and remove something from the tray and the children have to guess what it is that is missing. This was another great hit and engaged the children far more then I thought it would! I would say this is a game to reserve for school age children. There were a few pre-schoolers at the party who did enjoy it but I think it was because they were integrated with the older children.
Next stop was the pin the bow on the Hello Kitty which we set up on the wall. I drew her and cut the bow out myself because you can't buy one anywhere but it was worth it. The children loved it and did great at waiting their turn. As they were in groups of 4-5 they didn't have to wait long.
Table three I put out a tray of pens and some cardboard bunting and all the children got to decorate a bunting triangle. My original idea was that I would then string them up and put them up in my daughter's bedroom but most the children wanted to take them home which was absolutely fine. It was nice they had something they were proud of.
Table four was the age old, can't go wrong with it, works every time, biscuit decorating. Icing sugar, various sprinkles, a biscuit and a spoon. Job done. This never fails to delight children!
Pass the parcel is my daughters favourite party game and she asked that it be the first thing we did so I actually prepared two. One for the beginning and one for the end. The first one had a chocolate coin between each layer and the second as little toys that my husband and daughter had bought. For an nice added touch I put them in sweet little cellophane bags that had birthday balloons on so it was almost like they got a little present.
We did party boxes rather then party bags at the end of the party. I prefer boxes because I think they are more likely to be used again and again by the children where as party bags tend to go straight in the bin. We tied a helium balloon to every box so every child left with a party box, a balloon and I also made some biscuits that I put into Hello Kitty food bags. It felt like a great party.
Cake pops without the sticks
Marshmallows dipped in pink crystal sprinkles
Cupcakes
Meringues shaped like a 5
Cones with chocolate coins in
The table
Hello Kitty Bow straws (I stuck the bows on)
Food table
Hall decorations
How to rescue a helium balloon!
We served strawberry milk to drink
Happy faces and bows on the bananas to make them more 'a peeling' ;-)
A few weeks before the party we tried to find a nice party dress but couldn't find one that my daughter really liked and she asked if I could make her a tutu. I used pink and lilac net with a very large pink flower button on the front. For the top half I bought a pink leotard (She also does gym and tap so it will get plenty of use!) and a Hello Kitty iron on patch for the centre! Job done! She also has a hello kitty birthday badge on here!
Blessings x
Up until about 2 months ago my daughter hasn't liked 'Pink', proudly telling people she is not a 'pinkish' girl so this new pink stage has been a bit of a revelation to us all.
I love birthdays, I always have. When I was a little girl I would stretch my birth'day' as long as I could! Just a day? Oh no! Lets go for the whole weekend!
Something that I am really having to work on is setting myself new realistic physical expectations. I have always been very proud of my make it yourself attitude and it meant for the first three years as a wife and mother our meals were from scratch and my daughter and I made most the gifts that we gave. I loved the lifestyle. Of course, when I became disabled things had to change and it's possibly the thing I struggle with the most. It makes me feel completely inadequate!
My husband now does a lot of the cooking because it is difficult for me to prepare food and I really miss it. I will raise the blood pressure of feminists around the world now but we had a very traditional marriage. I was the home keeper and my husband was the bread winner. I was very fortunate that even before my illness my husband has always been hands on with house work on his days off (helping out where he could) but cooking was always my territory.
I take great pride in cooking nice meals for the people I love. As a little girl I use to plan elaborate menus and invite all of my extended family over for 'dinner parties'. For me cooking is about love, so you can imagine how difficult I have found it to let that go. (This is one of the things we have addressed with the occupational therapists. How to enable me to be able to cook completely independently again. Hoora!!)
Rationally I can say to myself 'All they need is your love and your time' and yet the fact that I can't 'do' as much as I use to is still a very sore wound for me. I am aware of it though which I think is positive and I am working on it. At least I've identified the sore spot!
It's not a great personality trait having your self worth (for want of a better phrase!) caught up in what you can physically do for other people but A; Before the disability I had no idea because I was able to give as much of myself as I wanted! and B; I do know now and it's explained a lot of past experiences to me and I fully intend upon growing as a person knowing this is within me. I guess it's all part of being kind to myself. (See previous blog!)
Urgh, I feel like this is sounding like I am a real downer on myself and it isn't meant to at all! I am not a self loathing person, I just, I feel my best when I am helping someone. I like to give to people and I suppose, what I am trying to explain is that it's only since I have become disabled that I've realised that that want to give to other people all the time is a bit wrapped up with how I see myself. In terms of being a useful human being etc. Man I have gone WAY off subject...
Getting back to the party...
Pre party as I looked at the food I had prepared and the decorations I had bought I simply thought "I haven't done enough" but when I saw how beautiful the hall looked and how happy my daughter was I was able to appreciate my hard work. (And the hard work of others. It wouldn't have been made possible without my amazing family and two friends who actually put all the decorations up for me!)
I also did something that I have never done before. I put myself in my wheelchair. Going in my wheelchair is normally only an option because I simply cannot do what it is I need to do without it (like being out in public in a non mobility scooter friendly place) but on this occasion I decided the best place for me to be was indeed in my wheelchair. Call it self preservation. I knew, if I didn't put my butt in that chair I would have over done it and the only person that pays for me over doing it is me. Well, in a physical sense anyway.
After the party I had a long soak in the bath and when I was reflecting upon the day it occurred to me that it was the first time I had felt comfortable in my wheelchair. Normally I HATE being in my wheelchair. The first time I went out in it I had a panic attack (after 6 years of not having one!) and it near enough broke my heart to see the reflection in shop windows of a woman sat in a wheelchair but here we are, 22 months later and I actually felt like 'me'. I was relaxed and I enjoyed myself. It was a HUGE victory. Huge. And even now a few days on it still feels pretty darn good.
I am so good at putting on the 'I cope with this so well' face but in this case I actually really did! It was such a fun party! I didn't feel like I was putting on a show or a brave face at all. I just genuinely had a blast.
I set up four tables each with a different activity on so the children were spilt into groups and then with an adult helper moved their way around the various activities so that everyone got a turn at everything and we weren't left with children running wildly around the room!
Table one was the toilet roll game! Using toilet roll you make yourself (or a nominated person in your team) an outfit to wear. The children had an absolute BLAST and we will definitely be doing this again! Even the mums couldn't resist getting involved!
Table two was the tray memory game. You place various items on a tray and cover it with a tea towel. You then do a sneaky swipe and remove something from the tray and the children have to guess what it is that is missing. This was another great hit and engaged the children far more then I thought it would! I would say this is a game to reserve for school age children. There were a few pre-schoolers at the party who did enjoy it but I think it was because they were integrated with the older children.
Next stop was the pin the bow on the Hello Kitty which we set up on the wall. I drew her and cut the bow out myself because you can't buy one anywhere but it was worth it. The children loved it and did great at waiting their turn. As they were in groups of 4-5 they didn't have to wait long.
Table three I put out a tray of pens and some cardboard bunting and all the children got to decorate a bunting triangle. My original idea was that I would then string them up and put them up in my daughter's bedroom but most the children wanted to take them home which was absolutely fine. It was nice they had something they were proud of.
Table four was the age old, can't go wrong with it, works every time, biscuit decorating. Icing sugar, various sprinkles, a biscuit and a spoon. Job done. This never fails to delight children!
Pass the parcel is my daughters favourite party game and she asked that it be the first thing we did so I actually prepared two. One for the beginning and one for the end. The first one had a chocolate coin between each layer and the second as little toys that my husband and daughter had bought. For an nice added touch I put them in sweet little cellophane bags that had birthday balloons on so it was almost like they got a little present.
We did party boxes rather then party bags at the end of the party. I prefer boxes because I think they are more likely to be used again and again by the children where as party bags tend to go straight in the bin. We tied a helium balloon to every box so every child left with a party box, a balloon and I also made some biscuits that I put into Hello Kitty food bags. It felt like a great party.
I made the topper and was almost finished when I popped into the kitchen...
Just minutes later my daughter came in and said 'Look Mumma I drew on the mouth!'
So, yes she doesn't look like a Hello Kitty topper but she is a beautiful cat that my daughter
helped with!
A few weeks before the party we tried to find a nice party dress but couldn't find one that my daughter really liked and she asked if I could make her a tutu. I used pink and lilac net with a very large pink flower button on the front. For the top half I bought a pink leotard (She also does gym and tap so it will get plenty of use!) and a Hello Kitty iron on patch for the centre! Job done! She also has a hello kitty birthday badge on here!
Blessings x
Monday, 6 January 2014
Stepping into 2014 in style.
BOOM! Now if that isn't the best t-shirt you ever did see I challenge you to show me better!
2014 has descended upon us which means it is now less then 6 weeks until album launch time! Wow! Steve and I have put so much of ourselves into this album I hope people enjoy listening to it as much as we enjoyed making it. On a personal level it has been a bit of a sanity saver for me in the crazy that was 2013.
If you want to learn more about the music collaboration 'Songbird' I am in head on over to www.relaxx.co.uk or www.soundcloud.com/songbird-Unexpected. You can also like us on Facebook at www.facebook.com/unexpectedsongbird or be our friend by searching Song Bird (two words!)
Ok, plug over! As much as I could go on and on about that particular project I shall save that for another day! This is a health/life blog after all!
Update time!
I managed to honour the promise to myself that I would not put myself under lots of pressure for the 'perfect' Christmas but instead have the best Christmas we could have with my health limitations and I honestly think I did it!
The 10 days leading up to Christmas were still earth shattering exhausting but that was because my poor husband had an accident and ended up with his arm in a sling for a week! Our daughter was still at school and buzzing about Christmas coming and oh man it was such a busy week. There were a few crying tired tears! The thing I learned though it that actually in a time of crisis I CAN cope. Physically I paid for it but that was inevitable, the fact is, I learned that I am not as useless in a time of extra physical demand as I thought I would be!
We had a wonderful Christmas and I really felt like we got it 'right'. Good feeling.
The colder weather has bought higher pain levels as it does, but I have taught myself a new word. Capacity. Now I hear you say "But Clo, surely you have known this word most of your life?" and of course I have but I have just recently realised 'Capacity' is a word I like.
It has removed the constant battle between my desire and my capability. For the past 22 months my pain has been the enemy, I have been locked in a battle to not let my pain 'win'. It was to be challenged and never 'allowed' to hold me back. Do you know where this attitude gets you? I'll tell you... no where fast!
The only place that gets you is crying on your bed because once again you lost the battle! (Yeah, so, I don't like admitting that to the world wide web but once again I will say this blog is all about what it is like to live with a chronic illness and, well, that's what it is like sometimes!)
I am now listening to my body more and more and taking her lead. I have not yet mastered this art but by using the word 'Capacity' I am able to rationalise my need for extra physical rest in a way I never have before. Go me!
I have an almost constant dialogue running in my mind. "Do you have the capacity for this? No? Then what about this? Have you got the capacity to do this? Yes?! Wonderful!" etc. I am also holding the consultants words very close to my heart... "Just be really kind to yourself".
I have learned if you live with a chronic illness and you are not kind to yourself not only do you suffer but so do all the people around you who love you and care for you. I am day by day learning to forgive myself and be kind to myself. I cannot offer anything to anyone else if I am laid up in bed!
These are all amazing positive steps and I hope this can truly be the beginning of living with my illness instead of against it! If this is the first time you have read the blog (where have you been?! ha!) and don't know what on earth I am talking about all is revealed here http://www.youtube.com/watch?v=P-AeepZVuZQ
The not so good news is that my stomach has nose dived over the past 3ish weeks. Since June my husband and I have noticed that I am sick a lot more then your average joe but in the past 3 weeks I have been violently sick everyday and 'holding down' maybe one in every 10 meals? I am nibbling when I can and drinking lots of fluids but even that can be ridiculously painful at times!
At the moment the only thing I can do really is keep trying different foods and drinking home made juices. A wonderful friend of mine bought me over a soup maker yesterday (which felt like the kindest thing in the world) so I am keen to use that. You throw all your veg in with some stock, set it to the type of soup you want and leave it in the same way you would a stew in a slow cooker. Here's the best bit though! At a set time within the cooking process it blends it! How awesome is that!
Needless to say I am so hungry! I feel empty in a way I never have before and would be inclined to chew on anything if it stayed still next to me for too long (says the vegetarian) watch out cat!
I live in hope that a week or two with juices and soups will give my tummy a rest and hopefully the muscles will start doing their job again. Lazy beeps! ;-)
Although this new development is far from my idea of fun I have achieved two things;
1. Using my visualisation to help me raise above the frustrations of it all. In my mind I have spent a pretty good chunk of time stood next to a lake in Canada watching my pain float away in the past 3 weeks. How very Zen of me! Haha!
2. Not to panic. Even when the pain has been off the chart I have not reached my panicky pain since the 19th December which in the very least deserves a huge high five! It's not just a step forward it's a hop, skip and a jump forward! (Ironic concept there for a wheelchair user eh! LOL)
So I guess that brings us up to now! It's a funny sort of thing when we hit a celebration like NYE because everyone wishes each other 'health and happiness' at times that can feel a little like rubbing salt in a wound but even that I have managed to put into my own perspective.
Yes my disease is genetic and yes it will likely get worse with age but this is the first year that I have known what condition I am living with and I am keen to learn just exactly how to live with this. I will try everything and anything so that this becomes a part of my life and not my entire life. Chronic illness can consume you and lord knows that is nobodies 'fault' but I believe in my heart that my standard of living can and will improve in the months ahead. In 2014 I will be brave enough to embrace just about every alternative therapy under the sun because, well, for want of a better phrase I deserve it! I deserve health. Whatever my 'healthy' is. I deserve it.
It's our daughter's 5th birthday soon and we're having a party for her next weekend. Watch this space for the party blog!
Be blessed peeps!
Remember, tell the people you love you love them, tell the people you like how much they mean to you and concentrate your time on the people who make you feel good! Life is so precious.
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