A week away

So I've been silent this week.

I was taken to hospital via ambulance Sunday and here I remain. Today is day 7, mothers day. Perhaps the crappest day (yes I said crap!) to be away from your child and your mother but both will visit this afternoon.

It's been a long week. I have been on meal replacement since I arrived and whilst I was doing a great job building them up I can't bare to look at them now! Still down they must go!! At a whopping 300 calories a 'shake' my aim set out by the dietian is 6. Yesterday I managed a miserable half. But I did have a 'build up soup'. Good for me.
Today I've just stuck the straw in the second. It doesn't sound it but I really am trying my best.

I have swung between bright and crashing. I was on a morphine pump for 5 days which didn't do me much good. It's an evil thing to put in your system.

Being off the morphine now I feel much more like the me I am use to but I must admit to feeling a bit miserable today. What can I say, it's mothers day and I am home sick.

My body has also been through a traumatic amount of pain this week as the nurses on the first ward failed to understand the importance of consistent pain management. One night I was left for an hour and a half in sheer agony as my stomach spamsed and pulled me forward each time causing my hip to dislocate. My husband ended sat on the bed relocating my hip and trying his best to hold it in place as I squirmed in agony. I don't scream or shout in pain. I become trapped in by it. Unable to voice it. Maybe if I did scream I would have been given the pain medication sooner. All this because my canula had been taken out and only doctors are allowed to put them in. This trauma and Sundays trauma will slowly be worked out in my mind as it does with all pain trauma. It feeds it to me in bite size portions. Thank God.

So far I am not responding to any treatment and have picked myself up another chronic illness. A common sub syndrome of the hypermobility syndrome called 'dysmotility syndrome'. Basically my bowel is buggered. It can be managed with medication (for life) and diet but need to get the damn thing working again first. Joy.

It's hard to be yourself in hospital. You're surrounded by people whose spirits are struggling. Bless them. It dawned on me today how much I miss the sky and the breeze.

I can't even begin to feel how much I miss my daughter and my husband.

I am angry with my body for ignoring my demands to get well. Doesn't it know I have a life to live?!

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Since writing the above I have had Amelia-Rose, Tony, Mum and Dad to visit and we sat outside IN THE SUN for over an hour. God it felt so insanely good to feel a breeze on my face.

I just hope I can get home soon and regain my previous strength. A week in bed has done my muscles no good at all. I walked today and was shocked what such a short distance did to provoke such painful muscle fatigue. This is absolutely not going to be the new norm. I am NOT going to leave here in a wheelchair and not get out of it. Lord no that is not going to happen.

A wonderful fabulous friend gave me a book about the amazing artist Frida Kahlo. What a woman. I so relate to her story and her paintings. She lived with the most debilitating pain and yet achieved so much as an artist. A true inspiration.

It's been amazing to read the book of her life and see her paintings when I am suffering so much with my own body.

What I wouldn't give for a healthy body...

You can't be pitiful and powerful though so best bury that pity....

The pondering of a wonderful husband.

I was listening to some worship music earlier (for the first time in a very long time) which prompted a conversation with my husband about how I am doing spiritually.

I have always been spiritual, especially since we relocated to Dorset 4 and a half years ago. Moving here really felt like my homecoming. I grew to a place that I had never been before and was very comfortable in that place.

I believe that our spiritual wellbeing is as important as our emotional, physical and mental health and I had grown to nurture that part of myself. Whatever you chose to believe in or not believe in doesn't stop you from being spiritual. I know some people that don't openly affiliate with any one God but they are still incredibly spiritual. I think sometimes the lines between being religious and spiritual are seen as one and the same and I don't really think they are. They are two separate qualities.

I started to find it very difficult to go to church about November last year, I should say going to church is something I have done all my life and I think it is one of the best communities you can be a part of (if you find the right one for you) but it became the place that I really 'felt' the emotional pain that went along with suddenly becoming disabled.

All the things I have lost, especially as a wife and a mother would hit me when I went to a service. I found I was doing well and adapting to our new life but then when I went to church the enormity of everything would strike. The good feeling I got when I went to church went and I found I was getting more and more anxious at the thought of going.

At first it didn't matter to me as such because I continued to pray and nurture my spirit in other ways but I think in all honesty around Christmas time I stopped doing that too. Weeks would pass without me praying or meditating which is so unlike me. It only dawned on me today how under fed I am spiritually at the minute.

I haven't stopped believing in God (amongst other things) but I am angry with him. I hate typing that but it's the truth. It's difficult when you're surrounded by stories of healing and you're sick. Do I feel like if you have so much power where's my healing... maybe. But I recognise that healing comes in many forms it doesn't always work like that.

Emotionally I feel I have been healed from many past hurts since becoming disabled but sometimes I feel like there is an expectation (I suppose partly self inflicted) for me to suddenly be physically healed and I don't believe it always works like that. I get this sense sometimes that I am letting people down by not getting better physically. It's like I want to affirm people and their prayers but that's a completely unrealistic pressure to put on myself.

I need to start filling myself up again though. My husband said one of the things he struggles with most about my illness is what it has done to my spirit. Although he is agnostic he has always recognised how important my faith is to me and he feels like the pain has taken that away form me. Not completely but enough for something that has always bought me great comfort to no longer be straight forward.

This lead to another conversation about a day course I have the opportunity to go to on Saturday. I have been to the place before and it lifted me higher then I have ever been. It was the most amazing place and I have wanted to go back ever since.

My initial response was no because it is an hour away and not a straight forward journey (lots of back roads and windy roads!) and the idea of sitting for such a long time is daunting! My husband then made a pretty bold statement! "You make me cross sometimes" "In what way?" I asked slightly bemused and he replied "If someone needed you, even if it was going to be detrimental to your health you would go but when it's something that could help you you put walls up and don't go because you think it is beyond you."

It was quite the observation and he's absolutely right. I constantly say yes to things that maybe I shouldn't and I pay the physical cost but when it is something just for me I won't do it because I fear the fall out. It's tricky when something that brings you pleasure will ultimately bring you pain and there is always a physical price to pay but, I don't know. Maybe there are situations that I should be saying yes to for my spiritual sake. Pain is pain. One way or another physically I feel it all the time. Can I continue saying no to things that would feed my spirit because of fear of the physical fall out and yet say yes to things for other people and bare the physical fall out?

I think we all know what the answer the that is don't we.

So operation sort my spirit has begun. There is a sound for health course starting Sunday, I did a condensed version around the time I first went on the crutches before I had my first operation and it was the most wonderful experience. I have been talking about going for a weekly 'sound bath' ever since and yet 18 months on and I still haven't gone back! I am thinking I will sign up for the course and let it kick off me reconnecting. I need to stop ignoring my spiritual self and take down some of those walls.

I am so blessed to have such an observant husband.

An apology to the universe !

A weird thing happened today.

We were making our way back to waterloo to head home after having a really nice stay in London. It is no lie that I find going to London for all the hospital appointments really stressful. It's not so much once we're there but I hate leaving Amelia-Rose and how disruptive it is to our family life. Travelling also takes a real toll on my body.

This time though we took Amelia-Rose with us! Work on the train line forced us to stay another night which originally I was resenting (costing us another £164 in hotel fees!) but we have had a nice family break away and going to hospital was a mere blip on the radar. The weather was beautiful too!

Anyway, I digress. On the way back up to the station we passed a woman in a wheelchair who was self propelling (insider speak for making herself go) and I gave her my best stranger beamy smile and she looked at me and completely froze me out! Actually, she looked really annoyed that I had smiled at her.

Now I am a beamy smile at a stranger kind a gal, I don't think it costs a thing to smile at someone and for some reason I just assumed this woman would smile back. But why? I don't expect 'able bodied' strangers to smile back, although of course it's always a pleasure when they do but I honestly thought this woman would automatically smile back. It didn't actually occur to me that she wouldn't... until she didn't.

Before we had our daughter my husband and I would go for long bike rides on beautiful days and I always loved the 'biker nod'. It's an unwritten rule amongst bikers that when you pass each other you nod. I just always thought it was very cool.

When this woman didn't smile back, in my head I got all 'Oh charmed I'm sure, nice, really nice' which I would never do if an up right stranger didn't smile back!

I was thinking about the whole scenario on the way home. It really bothered me how I reacted to this woman not smiling. I think there is a part of me that has this ideological vision of seeing someone else in a wheelchair and us sharing that all knowing smile and nod. Just connecting because we both 'get it'.

Unless you've had to be in a wheelchair for an extended period of time or have the knowledge you will be in that chair either permanently or when you go out for the rest of your life it's very difficult to truly grasp that concept. To a good 90% of the population if you are in a wheelchair you are invisible. To the people who see you many often have a true sympathy in their eyes. It comes from a place of compassion but how i would adore to not conjure that emotion in someone!

I wanted this woman to smile back. I think I almost needed her to smile back? Then it dawned on me that I was doing exactly what I don't like having done! I didn't pause for a minute, or even a second to consider how her day was going. I saw a woman who looked well in herself but was in a wheelchair.  I didn't think about how many people had walked across her path or looked down on her. I didn't consider that she was in pain, felt awful or may have had a rough night.

It was really silly of me and I am sorry for it. I put negative thoughts out there in the universe about this woman and that wasn't really fair! Needless to say I take them all back. Or rather I want to replace them with good ones!

The past three mornings we have had the breakfast buffet at the hotel, when we're in that situation I always prefer to propel myself in my chair, I am increasingly beginning to do it out in the street too as my confidence being in the chair grows.

A few times it has dawned on me that I am different to everyone now. Not in a negative way just in a different way. I think this is all part of my own personal acceptance of my situation.  I think my want for this woman to smile at me came from a want to find a place in the 'disabled community' or even to find it! It's bizarre because I don't want people to see me as different but I am definitely beginning to accept that, yeah, I am different.

I am learning about my physical boundaries and figuring out who I am within those. I am understanding that I can still be 'me' within those boundaries but that I am not the me I was 2 years ago. In a want not to label myself as able or disable I have perhaps denied myself moving along the road. I have maybe trapped myself in a stale mate? Clearly I am still not exactly sure what this is all about otherwise I could be more decisive in my writing but I feel like something in me is changing. That maybe I am beginning to identify that indeed this is all part of my identity.

Singing sunshine and sundays

What wonderful weather we have been blessed with this weekend. It truly feels like spring has sprung!

I love spring, it's such a joyful season. Is there another time of the year when we are surrounded by new life bursting into bloom all around us? I think not. Of course summer is wonderful, long hours spent in the garden with a hot sun beating down on your skin but spring is something else. It always reminds me to be grateful to live in such a beautiful part of the world (something I am very aware I take advantage of).

We live just 2 miles from the sea and went to 'see the sea' Saturday and Sunday this weekend. Amelia-Rose had her first paddle in the water which she was thrilled about. Of course she got absolutely soaked but three things that never bother me as a parent are water, mud and paint.

Water dries, paint washes off as does mud. Obviously I wouldn't be thrilled if Amelia-Rose walked mud or paint all over the carpet and through the house but if it's on her it's fine by me! I love that I have a daughter who loves getting messy and isn't precious about staying neat and tidy. The way I see it she has the rest of her life to be neat and tidy (if she so desires!) these are the messy years.

I have some wonderful photos of her absolutely plastered in paint when she was three. I left her alone whilst I went to the loo and she decided she was going to 'do her make up' with the paints. The outcome was hilarious!

So lent is upon us once more and as always rather then giving something up I have taken something on. For me personally the battle is allowing myself time to do things that make me feel good.

Like almost every mother on the face of the planet I always put my free time into playing with Amelia-Rose but when she's at school I tend to fill the day with non essential 'stuff' or if I'm having a bad flare up I take the time to physically rest.

This lent I have set myself three goals. Two are reading on is practical.

My eye sight makes it very hard to concentrate on reading which is tough because I adore reading. We aren't 100% sure what is going on with my vision but everything is always slightly out of focus and it gets a lot worse when I am tired (to the point that I literally can't see straight, I couldn't read a word on the page even if I tried really hard to focus on it.)

 I am waiting to see a specialist as the optician said it wasn't actually my vision as such so it can't be corrected with glasses, in his opinion it is a muscular problem which of course would link in directly with the hypermobility syndrome.

Anyway to get any reading done I have to do it during the day so I am going to make sure I make time to do it.

I have chosen two books that I both think have something to offer me at the moment. 'Raising your spirited child' which discusses children that are 'more'. More sensitive to taste, touch, sound and emotions, mature for their age, very creative and intelligent. They can all be great personality traits but they do have a downside for the child that just feels 'more'.  The author refers to them as a  spirited child. For example, if Amelia-Rose is done wrong by another child and the other child won't say sorry she gets more upset about the injustice of not getting an apology then whatever was done to her. It's 'more' !

The other book is the prayer studying guide to the book 'The power of the praying parent'. Amelia-Rose is suffering with a bit of separation anxiety when she's dropped off to school at the minute and I'm doing everything I can to reassure her in a practical sense but it dawned on me that I haven't actually prayed about it. I thought if I did the work book it would discipline me enough to really think about the areas where Amelia-Rose might need prayer in her life at the moment.

The third and final up take is to try to do a bit of sewing everyday on my machine, or at least a couple of days a week for the simple fact that it makes me really happy! I bought some fabulous fabrics last year and I still haven't used it. I make Amelia-Rose skirts and with summer coming I would like to make some new ones. She has grown so much since last summer anything I made last year is going to look like a mini skirt!

I made myself an awesome camper van skirt last year and would like to make myself a few new skirts too. With the HMS induced trouble I am having with my digestion I have lost over stone since this time last year so will need a new summer wardrobe myself. I can't remember if I wrote about what's going on with my tummy at the minute? Around June last year certain foods started making me be sick but before Christmas I started being sick after most meals. There isn't an obvious pattern to it, I thought at first maybe I had developed a food intolerance but it didn't matter what I took out of my diet it didn't stop.

I did some research and it turns out that this kind of thing can happen to HMS sufferers. The consultant explained it to me that when you swallow (which is now very uncomfortable at best and very painful at worst) there comes a point when your muscles aren't strong enough anymore to keep pulling the food down so it comes back up. On very bad days just drinking water can feel like I have swallowed a whole apple and sometimes it feels like it has got stuck, that I hate. It's quite frightening. I have figured out 'safe foods' such as a bagel dipped in oat milk or tea and soy yoghurt. Cracker bread goes down and stays down too but things like potatoes, pasta and rice are really sporadic, sometimes they do sometimes they don't.

It's the reason I am juicing at home. It's the best way to get maximum nutrition into my body! Plus they taste amazing! My husband makes the best juices! We use the same ingredients but his always taste that bit better!

We are off to London again this week at the end of the week. We're going to take Amelia-Rose with us this time. I think it will do her a lot of good to see what actually happens on a day that we go to London. I wonder if in her head she is making it much bigger then it actually is which is maybe the reason she is getting upset going into school at the moment. I think we need to normalise it for her. Of course it will also help her to see the hospital before I go in for my operation in May.

Steve and I did an open air set at a event to celebrate International World Woman's day yesterday. It was absolutely brilliant! The sun was shining, the crowd were great and two of the musicians that played on the album and performed for us at the album launch spontaneously joined us! I will be posting some videos on YouTube this week sometime hopefully. If you want to hear some tracks off the album now though go check out  https://soundcloud.com/songbird-unexpected. Singing and performing makes me soul shine. It made me feel so good yesterday!

Right, that's it! I am off to bed. It's been a wonderful weekend and a good night sleep tonight would just be the cherry on top!

 

 

Hospital appointments and hormones.

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.