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Today has been a good day, a very lovely day actually but I'm feeling a bit blue now. For months now I have been so excited about going away on a trip over night to my favourite city in the UK (Bath) and tonight at least it is looking like I won't be able to go. Why? I'm not well enough.
So excuse me if this manifests into a whiny childish post but here it is I am going to say something I rarely say...
THIS ISN'T FAIR
I don't want to be in my 20's and have my life ruled by pain. This trip will do my soul good yet my stupid broken body is once again looking like it will get in the way and it isn't bloody fair.
It is likely over the next few nights I will reach a level of pain that only my husband knows how to deal with, my body becomes twisted in agony and there is little of 'me' left when I am in this state (that comes around once a month to give you a clue to what I am referring to). I had said to Tony if it happens to happen on the night I am away I would lock myself away in my hotel room but he is quite right in his response that there is no way I can go through it alone. It is also something I would never expect my friends to witness.
So what happens exactly, well, I do not cry, I shut down, I am restless yet walking is agony. I cannot stay in one position for more then a few minutes but any movement is horrendous. There is nothing we can do but ride it out. My body feels like it is on fire and the pain seems to touch every part of me. I can't talk or string a sentence together. I am completely overcome with pain. If I had to chose labour or this I would chose labour. Labour is productive and you get a rest between contractions. This is relentless.
It's so silly but I have been SO looking forward to this trip that I saved all the vouchers I got for my birthday back in June and have been saving money so I really could go and just have a good time. I had a head full of visions of christmas shopping and letting my spirit be fed by this city that holds such a special place in my heart. I wanted to absorb the atmosphere of the city and remember what life was like before chronic pain moved in.
If the peak had happened tonight I think I would have been over it enough to travel wednesday but if it is tomorrow night I almost stand no chance. I am lucky to get two hours sleep the night it happens. Out of desperation I thought maybe I should just risk it, of course I could not go and then it not happen until say friday but, again, rightly so Tony says that is too much of a gamble.
I have actually never had a night away with friends, this was such a big deal.
I hide my pain from my friends as best that I can and I would feel so sad for them to see me in such a state. Tony knows it, he knows that even in the very worst hour I will come through it, we will come through it together, it's something we go through every month, it's our 'normal'. For anyone else though it is not normal and I cannot imagine anyone seeing me hurting so much and not being disturbed and deeply upset by it. The friends that I am meant to be going with our absolutely wonderful and my not going is no reflection of them, I know they would do anything to make the pain go away but that's just the thing. Nothing can make it go away. I just have to ride it out.
I don't know maybe by some miracle I will fall asleep in a while and wake up in an hours time and it will begin. Then we can get through the horror of it all and I'll be ok to go on Wednesday. Never EVER have I been so desperate for this to happen.
I don't want this to be another thing I miss out on.
Sunday, 29 September 2013
Good grief?
On Tuesday I brought a glorious apple tree and today it was delivered. As I looked at my beautiful new tree I began to ponder over the significance of it arriving in our lives now. For me it provides a good analogy of something that has become a part of our lives. Grief.
May I explain that our grief is not like many others because the person we are grieving is still very much a part of our family. We are grieving me.
I would be a fool to think that the change from healthy very active mother to a disabled one with chronic pain would leave us all in exactly the same place that we were all in 18 months ago and it didn't take long to identify that one of the things we were all experiencing was a very deep grief.
When I think of the cycle that our apple tree will display to us over the next 12 months I take comfort in identifying with those constant changes. At the moment the leaves are green and the fruit it bares is prominent. Prominent just as our grief is. For the past 4 weeks as the reality of the new diagnosis settles in it feels that every day this grief is growing and there is nothing I can do to stop that before it is ready. Of course the next stage, when that fruit becomes too heavy for the tree to bear is for it to fall away and the tree will go into hibernation. Ploughing all of its resources into getting through the winter. Then, just as it appears that the days will be cold and the evenings will be dark forever the cycles of the seasons promise me that soon the tree will break out in beautiful blossom. A blossom that will nurture the wildlife around it. And on the cycle will go.
My husband has been a source of great strength to me through my illness and always let me feel exactly what it is I 'need' to feel. He never affronts or belittles my grief and it was he that helped me identify that it was natural for me to go into a time of mourning. After all, something has been lost that we will never get back. This support from him as helped me to identify the same emotions in my daughter.
Our daughter is a bright bubbly free spirit, for three years she had my undivided attention. I 'wore' her first on my front then on my back for as long as I could and I slowed down to see the world through her eyes. I rejoiced in motherhood. Our daughter has a wonderful vivid imagination and I was so blessed that she would allow me full access into her world. Everyday was an adventure, mess was our friend and being creative was second nature. I have no doubt that being her mother was the reason I myself had been born.
Before we moved in November 2012 I was house bound for almost 6 months. Only able to leave the house for hospital appointments and visits to the doctors. For a little over a month last year I actually ended up unable to leave my bed without support from my husband. The pain was all consuming.
I cannot imagine how the dramatic change must have been seen through such young eyes. If only I could take it all away. Of course I can't so we manage it as best we can. All the adults affected by this life changing event are allowed to have sad days and cross days so why on earth would we not allow our daughter the same?
The moment I realised we needed to acknowledge her sense of loss came about 12 months ago when I said to her "Come on sweetie, you need to cheer up" and she replied "But Mummy, the sad is just stuck in my head"
I would never presume to declare that we are doing it absolutely right but the way Amelia-Rose now responds to her 'hard' days would indicate to me that we must be getting something right.
Amelia-Rose will be 5 in January but she was just 3 and 3 months when I first went on the crutches. One of the first things I did for her came 3 months after the pain began. I drew and laminated a face for her but this wasn't any ordinary face... oh no! I made all different mouths and eyebrows that she could place on the face. When she had chosen a combination we would talk about how we might be feeling if we pulled that face and for added fun we would practise ourselves what those faces would look like. This gave her the language to put a name to a feeling. I believe it is one of the reasons she is so emotionally aware and compassionate now.
Anger is a huge part of the grieving process and something I felt we had to identify. There were flashes of a temper that we had never encountered before. It wasn't a defiant temper tantrum I could see that it ran so much deeper then that. My husband bore the brunt of her anger and it was so sad to see. I believe Amelia-Rose has every right to feel angry about what has happened but we learned that we needed to find a way to affirm her anger without it being directed at someone. The phrase we use is that 'You are allowed to be angry (at the situation) and use a cross voice but it is not ok to be angry 'at' Mummy or Daddy". Using this approach means that we can envelope her with love on her angry days and not see it as something that requires 'punishment'. Lord knows how I would cope if every time I felt frustrated or angry about the curve ball life has thrown at us resulted in me being told I wasn't allowed to feel that way. Channelling her anger means that we identify that she is entitled to feel that way but these are the ways that you process that feeling. We talk about angry words and always say to her after she has calmed down "We love you so so much, even when you're angry"
The other day we had had one such conversation and Amelia-Rose decided to test just how deep my love runs. We were cuddled up in bed (I'll move on to that later) and she said to me "Mummy would you love me if I was a grizzly bear?" "Yes" I replied "A little bug?" "A scary tiger?" "A big bus?" "A rhino?" "An elephant?" "A monkey?" "A shooting star?" "A moustache?" Of course I replied yes to everything and we had a laugh at the silliness of it all. The moustache one particularly made me laugh. The point is though that she knows no matter what we will love her.
As much as I try to put on a good show and prevent Amelia-Rose from seeing how much pain I am in she always knows if I am having a really bad day her behaviour will inevitably be affected in one way or another. If we are out in town (I use a mobility scooter) and I stop to chat with someone she may become whiny and impatient. In these situations I will say something along the lines of "She's just behaving exactly how I'm feeling on the inside" It is my subtle way of telling the observer that I do not consider this behaviour to be 'naughty' but it also affirms to Amelia-Rose that she is allowed to feel the way she does.
You wouldn't believe how many strangers see me in my mobility scooter or wheelchair and say to Amelia-Rose "Are you being a good girl and looking after mummy?" It isn't something that they would ever consider to be inappropriate but seriously, you're asking a 4 year old with a sick parent if they are looking after them? No way does she need that responsibility! To this statement I respond "Oooh no, it's not her job to look after me, it's my job to look after her" The thing that people forget is how literal children are. Amelia-Rose just needs to be a child. That's her job and that is her only job.
I always try to remember that even if she is completely consumed in a task those little ears are always listening.
Evenings and early morning are always the hardest times for me. Everything just feels so much more overwhelming. For this reason meal times have become something that inwardly I find quite difficult now but they have always been so important to me. For that reason I always try to keep them as positive as possible with a simple question "What was your favourite part of the day?" It has become a script that despite how much I am hurting physically or emotionally I am focussing on what has been great about Amelia-Rose's day. We all have to answer the question too and it's nice to be forced into ending the day on a positive.
Bedtimes. Bedtimes. Bedtimes. Every child should fall asleep by themselves in their own bed in their own bedroom. To this I say... WHO SAYS?! I'm sure super nanny would have a thing or two to say about this but if my little girl wants to climb into my bed at 7.30 and be cuddled to sleep after a story why the heck not?! When and only when you're child has been through what mine has are you allowed to tell me I am building a rod for my own back. Though she starts off in my bed she will go into her bed when my husband comes to bed and everything is fine. Here's the thing, when you are the parent of a grieving child you are in another ball game and though it's hard when people are being critical YOU know your child better then anyone else in the world and you love them more then anyone else in the world. As long as all of your decisions begin and end with love then how can that possibly be wrong.
The other thing we do is openly talk about 'how it use to be' whenever Amelia-Rose would like to. Is it painful for me? Yes of course it is, it actually magnifies my own grief but it is so important for her to feel the freedom that she can talk. Clearly she is still processing the change and talking always has been and always will be one of the best ways of 'coping'. It is not my job to make her feel responsible for upsetting me, I can cry it out when she isn't around. I never want her to feel like she has to hold anything 'in' to protect me. When she talks about being sad I will tell her it (my illness) makes me sad too but I never want to 'shut her down'. When she needs to talk, we talk. This is something we are going through together and I cannot imagine not being united with her on this one.
For a while if Amelia-Rose caught me crying I would tell her I was remembering happy memories and crying because I was so happy. One day I heard myself explaining this to her and thought "What the hell are you doing?! What kind of half arsed explanation is that?" I was trying to be her protector but teaching her a lie. So, I very calmly explained to her that Mummy was having a sad moment, I was sorry that she had found me sad and the sad wasn't her fault and it would pass but everyone gets sad sometimes. Even mummies. The acceptance of that explanation came much faster then the million questions that would follow if I told her I was crying because I was happy.
Every now and again Amelia-Rose will catch me off guard with a memory of how things use to be, a few weeks ago she was laying front down on my bed hanging over the edge doing a head stand and out of no where said 'Mummy do you remember when we use to stand up on the bed and dance really really jumpyish? I miss that' Unfortunately there is little I can do about that apart from talk it through with her but when last night she said to me just as I was putting her in the bath "Can you remember when we use to put knickers on our head?" Now there is a task I can do something about! So there we were, Amelia-Rose in the bath, me sat watching... with knickers on our head.
If Amelia-Rose is having a sad day herself (which is always displayed through clinginess, whining and completely falling apart over the smallest thing) we try to inject some silliness into the day. There were many spectacular water fights during the summer and face painting my husbands face (who has a beard!) is a favourite past time of hers. We are fortunate enough to live 2 miles from the sea so perhaps there will be ice cream on the front or a picnic in the lounge. I try to remember that these are the memories for her life that we are building with her and I hope I am doing enough so she remembers the fun things we did and not the sad days that we did them on. Not so long ago we'd had a really tough morning, I don't know what triggered it but Amelia-Rose was just irritable at everything I did and I could feel myself hurtling towards the end of my tither. In the end I ran a nice deep bath emptied a pot of sequins into the bath and added enough blue food dye to give the bath a fabulous blue glow but not enough to dye her blue! I added a few drops of lavender and geranium essential oil and in she went. Sequins and food colouring in the bath?! What a cleaning nightmare I hear you cry. Well, sod the cleaning. It worked. It was so out of the ordinary it was enough to lift her mood.
The other really important thing I learned to identify were Amelia-Rose's triggers. It's been a while since she's had one but Thursday morning had all the key indications that she was having a bit of a rough time to the point that I mentioned it to her class teacher when I dropped her off at 12.30. What were the triggers that day? Well Tony and I had to leave the house at 8.15am for a pain clinic appointment and then she had to come with us at 11.10 because I had a doctors appointment. Tony and Amelia-Rose did not have to come in with me but she still had the knowledge that I was seeing my doctor. Any kind of doctor or hospital appointment seems to be a trigger for her. For the first time ever I am going away for the night with my friends on Tuesday and we are going to visit Bath (My favourite city in the country) Wednesday. This whole week I have been telling her that it is blah number of sleeps until I go and I am going with two of my friends that she knows very well and we are having a nice trip away. This she is dealing with well, if I had just told her I was going away for the night you could guarantee she would think I was going into hospital and it would upset her.
One of the hardest things for me was when I first became disabled and Amelia-Rose would bring me all of these 'special drinks' to make my legs better. How do you tell your only child that a magic drink wouldn't work. It was so sad, although I honestly couldn't tell you which was sadder. Her making the drinks for me or when she stopped. There are some things that with all the strategies in the world you can never make right.
So now is the time for me to admit something that parents everywhere hide. Sometimes I get it really wrong. The pain is too much and I turn into something that resembles the step mother in fairy tales, I am snappy and lack patience. I just want to left alone. I want to wallow. Amelia-Rose has been unreasonable all day and I have just had enough of compromising. Nothing I do will calm her down or bring her out of a hot tempered crying fit. Then what do you do? Your precious child who you would move heaven and earth to make happy is just really rubbing you up the wrong way. This is piece of advice that was passed onto my mother when I was a toddler and I use regularly "You just love her through it" What more can a parent do for a child then to love them.
I am amazed how well Amelia-Rose has adjusted to this new kind of normal, obviously as written about above there are still hard days and sad days but we face them together. We cannot deny that our lives are very different to the families around us but that does not mean that our roots aren't as strong and just as our apple tree will dig its roots deep into the ground and entwine with each other to keep the tree standing through the storm so will we.
May I explain that our grief is not like many others because the person we are grieving is still very much a part of our family. We are grieving me.
I would be a fool to think that the change from healthy very active mother to a disabled one with chronic pain would leave us all in exactly the same place that we were all in 18 months ago and it didn't take long to identify that one of the things we were all experiencing was a very deep grief.
When I think of the cycle that our apple tree will display to us over the next 12 months I take comfort in identifying with those constant changes. At the moment the leaves are green and the fruit it bares is prominent. Prominent just as our grief is. For the past 4 weeks as the reality of the new diagnosis settles in it feels that every day this grief is growing and there is nothing I can do to stop that before it is ready. Of course the next stage, when that fruit becomes too heavy for the tree to bear is for it to fall away and the tree will go into hibernation. Ploughing all of its resources into getting through the winter. Then, just as it appears that the days will be cold and the evenings will be dark forever the cycles of the seasons promise me that soon the tree will break out in beautiful blossom. A blossom that will nurture the wildlife around it. And on the cycle will go.
My husband has been a source of great strength to me through my illness and always let me feel exactly what it is I 'need' to feel. He never affronts or belittles my grief and it was he that helped me identify that it was natural for me to go into a time of mourning. After all, something has been lost that we will never get back. This support from him as helped me to identify the same emotions in my daughter.
Our daughter is a bright bubbly free spirit, for three years she had my undivided attention. I 'wore' her first on my front then on my back for as long as I could and I slowed down to see the world through her eyes. I rejoiced in motherhood. Our daughter has a wonderful vivid imagination and I was so blessed that she would allow me full access into her world. Everyday was an adventure, mess was our friend and being creative was second nature. I have no doubt that being her mother was the reason I myself had been born.
Before we moved in November 2012 I was house bound for almost 6 months. Only able to leave the house for hospital appointments and visits to the doctors. For a little over a month last year I actually ended up unable to leave my bed without support from my husband. The pain was all consuming.
I cannot imagine how the dramatic change must have been seen through such young eyes. If only I could take it all away. Of course I can't so we manage it as best we can. All the adults affected by this life changing event are allowed to have sad days and cross days so why on earth would we not allow our daughter the same?
The moment I realised we needed to acknowledge her sense of loss came about 12 months ago when I said to her "Come on sweetie, you need to cheer up" and she replied "But Mummy, the sad is just stuck in my head"
I would never presume to declare that we are doing it absolutely right but the way Amelia-Rose now responds to her 'hard' days would indicate to me that we must be getting something right.
Amelia-Rose will be 5 in January but she was just 3 and 3 months when I first went on the crutches. One of the first things I did for her came 3 months after the pain began. I drew and laminated a face for her but this wasn't any ordinary face... oh no! I made all different mouths and eyebrows that she could place on the face. When she had chosen a combination we would talk about how we might be feeling if we pulled that face and for added fun we would practise ourselves what those faces would look like. This gave her the language to put a name to a feeling. I believe it is one of the reasons she is so emotionally aware and compassionate now.
Anger is a huge part of the grieving process and something I felt we had to identify. There were flashes of a temper that we had never encountered before. It wasn't a defiant temper tantrum I could see that it ran so much deeper then that. My husband bore the brunt of her anger and it was so sad to see. I believe Amelia-Rose has every right to feel angry about what has happened but we learned that we needed to find a way to affirm her anger without it being directed at someone. The phrase we use is that 'You are allowed to be angry (at the situation) and use a cross voice but it is not ok to be angry 'at' Mummy or Daddy". Using this approach means that we can envelope her with love on her angry days and not see it as something that requires 'punishment'. Lord knows how I would cope if every time I felt frustrated or angry about the curve ball life has thrown at us resulted in me being told I wasn't allowed to feel that way. Channelling her anger means that we identify that she is entitled to feel that way but these are the ways that you process that feeling. We talk about angry words and always say to her after she has calmed down "We love you so so much, even when you're angry"
The other day we had had one such conversation and Amelia-Rose decided to test just how deep my love runs. We were cuddled up in bed (I'll move on to that later) and she said to me "Mummy would you love me if I was a grizzly bear?" "Yes" I replied "A little bug?" "A scary tiger?" "A big bus?" "A rhino?" "An elephant?" "A monkey?" "A shooting star?" "A moustache?" Of course I replied yes to everything and we had a laugh at the silliness of it all. The moustache one particularly made me laugh. The point is though that she knows no matter what we will love her.
As much as I try to put on a good show and prevent Amelia-Rose from seeing how much pain I am in she always knows if I am having a really bad day her behaviour will inevitably be affected in one way or another. If we are out in town (I use a mobility scooter) and I stop to chat with someone she may become whiny and impatient. In these situations I will say something along the lines of "She's just behaving exactly how I'm feeling on the inside" It is my subtle way of telling the observer that I do not consider this behaviour to be 'naughty' but it also affirms to Amelia-Rose that she is allowed to feel the way she does.
You wouldn't believe how many strangers see me in my mobility scooter or wheelchair and say to Amelia-Rose "Are you being a good girl and looking after mummy?" It isn't something that they would ever consider to be inappropriate but seriously, you're asking a 4 year old with a sick parent if they are looking after them? No way does she need that responsibility! To this statement I respond "Oooh no, it's not her job to look after me, it's my job to look after her" The thing that people forget is how literal children are. Amelia-Rose just needs to be a child. That's her job and that is her only job.
I always try to remember that even if she is completely consumed in a task those little ears are always listening.
Evenings and early morning are always the hardest times for me. Everything just feels so much more overwhelming. For this reason meal times have become something that inwardly I find quite difficult now but they have always been so important to me. For that reason I always try to keep them as positive as possible with a simple question "What was your favourite part of the day?" It has become a script that despite how much I am hurting physically or emotionally I am focussing on what has been great about Amelia-Rose's day. We all have to answer the question too and it's nice to be forced into ending the day on a positive.
Bedtimes. Bedtimes. Bedtimes. Every child should fall asleep by themselves in their own bed in their own bedroom. To this I say... WHO SAYS?! I'm sure super nanny would have a thing or two to say about this but if my little girl wants to climb into my bed at 7.30 and be cuddled to sleep after a story why the heck not?! When and only when you're child has been through what mine has are you allowed to tell me I am building a rod for my own back. Though she starts off in my bed she will go into her bed when my husband comes to bed and everything is fine. Here's the thing, when you are the parent of a grieving child you are in another ball game and though it's hard when people are being critical YOU know your child better then anyone else in the world and you love them more then anyone else in the world. As long as all of your decisions begin and end with love then how can that possibly be wrong.
The other thing we do is openly talk about 'how it use to be' whenever Amelia-Rose would like to. Is it painful for me? Yes of course it is, it actually magnifies my own grief but it is so important for her to feel the freedom that she can talk. Clearly she is still processing the change and talking always has been and always will be one of the best ways of 'coping'. It is not my job to make her feel responsible for upsetting me, I can cry it out when she isn't around. I never want her to feel like she has to hold anything 'in' to protect me. When she talks about being sad I will tell her it (my illness) makes me sad too but I never want to 'shut her down'. When she needs to talk, we talk. This is something we are going through together and I cannot imagine not being united with her on this one.
For a while if Amelia-Rose caught me crying I would tell her I was remembering happy memories and crying because I was so happy. One day I heard myself explaining this to her and thought "What the hell are you doing?! What kind of half arsed explanation is that?" I was trying to be her protector but teaching her a lie. So, I very calmly explained to her that Mummy was having a sad moment, I was sorry that she had found me sad and the sad wasn't her fault and it would pass but everyone gets sad sometimes. Even mummies. The acceptance of that explanation came much faster then the million questions that would follow if I told her I was crying because I was happy.
Every now and again Amelia-Rose will catch me off guard with a memory of how things use to be, a few weeks ago she was laying front down on my bed hanging over the edge doing a head stand and out of no where said 'Mummy do you remember when we use to stand up on the bed and dance really really jumpyish? I miss that' Unfortunately there is little I can do about that apart from talk it through with her but when last night she said to me just as I was putting her in the bath "Can you remember when we use to put knickers on our head?" Now there is a task I can do something about! So there we were, Amelia-Rose in the bath, me sat watching... with knickers on our head.
If Amelia-Rose is having a sad day herself (which is always displayed through clinginess, whining and completely falling apart over the smallest thing) we try to inject some silliness into the day. There were many spectacular water fights during the summer and face painting my husbands face (who has a beard!) is a favourite past time of hers. We are fortunate enough to live 2 miles from the sea so perhaps there will be ice cream on the front or a picnic in the lounge. I try to remember that these are the memories for her life that we are building with her and I hope I am doing enough so she remembers the fun things we did and not the sad days that we did them on. Not so long ago we'd had a really tough morning, I don't know what triggered it but Amelia-Rose was just irritable at everything I did and I could feel myself hurtling towards the end of my tither. In the end I ran a nice deep bath emptied a pot of sequins into the bath and added enough blue food dye to give the bath a fabulous blue glow but not enough to dye her blue! I added a few drops of lavender and geranium essential oil and in she went. Sequins and food colouring in the bath?! What a cleaning nightmare I hear you cry. Well, sod the cleaning. It worked. It was so out of the ordinary it was enough to lift her mood.
The other really important thing I learned to identify were Amelia-Rose's triggers. It's been a while since she's had one but Thursday morning had all the key indications that she was having a bit of a rough time to the point that I mentioned it to her class teacher when I dropped her off at 12.30. What were the triggers that day? Well Tony and I had to leave the house at 8.15am for a pain clinic appointment and then she had to come with us at 11.10 because I had a doctors appointment. Tony and Amelia-Rose did not have to come in with me but she still had the knowledge that I was seeing my doctor. Any kind of doctor or hospital appointment seems to be a trigger for her. For the first time ever I am going away for the night with my friends on Tuesday and we are going to visit Bath (My favourite city in the country) Wednesday. This whole week I have been telling her that it is blah number of sleeps until I go and I am going with two of my friends that she knows very well and we are having a nice trip away. This she is dealing with well, if I had just told her I was going away for the night you could guarantee she would think I was going into hospital and it would upset her.
One of the hardest things for me was when I first became disabled and Amelia-Rose would bring me all of these 'special drinks' to make my legs better. How do you tell your only child that a magic drink wouldn't work. It was so sad, although I honestly couldn't tell you which was sadder. Her making the drinks for me or when she stopped. There are some things that with all the strategies in the world you can never make right.
So now is the time for me to admit something that parents everywhere hide. Sometimes I get it really wrong. The pain is too much and I turn into something that resembles the step mother in fairy tales, I am snappy and lack patience. I just want to left alone. I want to wallow. Amelia-Rose has been unreasonable all day and I have just had enough of compromising. Nothing I do will calm her down or bring her out of a hot tempered crying fit. Then what do you do? Your precious child who you would move heaven and earth to make happy is just really rubbing you up the wrong way. This is piece of advice that was passed onto my mother when I was a toddler and I use regularly "You just love her through it" What more can a parent do for a child then to love them.
I am amazed how well Amelia-Rose has adjusted to this new kind of normal, obviously as written about above there are still hard days and sad days but we face them together. We cannot deny that our lives are very different to the families around us but that does not mean that our roots aren't as strong and just as our apple tree will dig its roots deep into the ground and entwine with each other to keep the tree standing through the storm so will we.
Catch up
I guess I must first apologise for not writing for 10 days. What a 10 days it has been. There have been some really lovely times and positive steps and some not so lovely times and positive steps but life is nothing if it isn't varied!
Last weekend my husband had the whole weekend off (HOORA!) and we decided we were really going to 'make the most of it'. Our local children's centre runs a group every other Saturday called 'Saturdads' which Tony has always enjoyed taking our daughter along too (Whilst I'm sure firstly it is because it is such a nice bonding experience between father and daughter I am quite sure the bacon sarnies play a role also!) Due to the nature of Tony's work he works almost every weekend so isn't able to take her consistently but whenever he is off they always make the effort to go.
I used the time to sit and make some bread, I've really thrown myself back into making bread because of the great sense of satisfaction it brings me. Unfortunately because of the pain in my hands I am unable to beat the c**p into the dough as perhaps once I would (any frustrated bread maker will relate with this!) but because my wonderful man brought me a fantastic food mixer (with dough blade!) for Easter bread making is not beyond me.
In the afternoon we went to our local farm shop and after a mooch about and a cup of tea we sat outside for an hour. I sat watching the chickens and talking at Tony about animal welfare and responsible food sourcing (these were very happy chickens I might add!) and Amelia-Rose played on the climbing frame. I say talked 'at' rather then talked 'to' because I'm really not sure how much went in. Poor Tony has learnt to put up with me and my ethical food shopping rant!
I was absolutely exhausted by the time we got home so what on earth possessed me to decide that was 'the' time to make a shepherds pie for the freezer is beyond me. Needless to say it ended in tears. Tears of sheer exhaustion! I wasn't especially sad just so so tired.
I don't like referring to what I experience as 'tired'. Tired is having a few bad nights sleep, this is every part of my body feeling like lead. I feel as if someone has literally sucked all the energy out of me and even thinking is too much. The cruel thing is though is that it's a 'tiredness' that does not allow you to sleep. It keeps you awake for hours through the night!
On Sunday Amelia-Rose and I went blackberry picking with a friend of mine and her daughters then we went back to her house to tea. There are people in life who just do your soul good and this friend is definitely one of those people. We had to take my mobility scooter but she never once made that feel like a problem. She completely accepts me as I am and I don't think she'll ever be able to grasp how much that means to me. It was such a wonderful afternoon followed by the most amazingly scrummy dinner. Sometimes when you're in a dark cave you find a diamond and she is definitely one of my diamonds.
For a while now I have been getting the most horrendous headaches and am experiencing constantly blurred vision and black spots which descend into my vision at the most inconvenient times! It's one of the reasons I have been enable to update for so long! On Monday I went to the optician expecting I would just get a prescription for glasses as I should be wearing them for reading anyway (I say 'should' because the last prescription I got 3 years ago I never filled. Bad Chloe!) The optician confirmed that my vision is blurred and 'not what it should be' and I do need a slight prescription but the problem isn't being caused by my eyes and he didn't write me the prescription.
This is something I should be able to take in my stride but I didn't. By the time I got home I was so worked up I rang my mum and cried down the phone for almost an hour. My brain was letting me 'feel' about my situation and holy moly did it hurt. I have been in very deep shock since my appointment in London but every now and again the enormity sets in and I am devastated, earth moving, world shattered devastated. I was furious with my body once again for not being straight forward. For most people if you have trouble with your vision you go to see an optician and get glasses but of course, no, my body would never allow something so straight forward. I feel like my body has let me down in the most cruel way. In my soul lays a free spirit desperate to dance, skip and celebrate her way through life but she dwells in a broken body. I read this quote recently and it sums up exactly how I feel "I got my head together and my body fell apart".
I could not write this blog honestly without discussing the emotional hurt that this disability has brought with it. Until 4 weeks ago I very rarely cried about my hips, I think I was afraid if I started I would never stop. Now though, I cannot control it. Out of nowhere I will find myself head down sobbing into whatever it is I happen to be doing.
On Tuesday for example, Tony drove me up to collect our daughter from school and I was doing ok. That is until I looked in the rear view mirror and saw him getting the wheelchair out the boot. With no warning the tears set in and I felt the darkness surrounding me. I don't want to be in a freaking wheelchair. I want to be like every other parent in the playground STANDING PAIN FREE to collect their child from school. I don't want the 'looks' and silent wonderings. I want to be WELL and Lord knows Amelia-Rose deserves to have a mother who can run along splashing in the puddles with her.
People think I am coping so well and generally yes I do. I have all my life had a sense of every hardship being there to prepare for something that is yet to come. We all have difficult times and I have always had a 'feeling' that one day everything would become clear and fall into place. That belief gives me a strength to always keep moving forward. Now though, I don't know. I am so tired of 'fighting' and 'getting through'. I just want someone to lay me down and let me rest. This has been going on such a long time now. When inner strength shouts 'This isn't it, there is more to come you just wait and see' I have become aware of the sound of despair 'Pain and exhaustion are your life now'.
I am now being seen by our local pain management clinic and I am very hopeful that together that partnership will give me some of my Chloe fight back. I have had two appointments now and each one has left me with a huge sense of hope. I have another in two weeks time. The lady I see is so very kind and compassionate. I can tell she really 'gets' it and is so affirming of how I feel. Yesterday she explained to me that because of the HMS my nervous system really does respond differently to pain, she said "Imagine most people have a cheap car alarm response to pain... well you have a Ferrari alarm" this perfectly summed up for me why I feel my pain is out of proportion. For example, last weekend I woke up with the tiniest cut in the corner of my mouth, through the week it became a little ulcer and whilst it is still that small little ulcer I honestly feel like someone has slapped me on the side of my face. The entire left side of my face is stinging. Ferrari alarm.
When I see her again in two weeks we are going to work on some relaxation techniques that she thinks I will find useful as I prefer a holistic approach to life. I am also going to start seeing her colleague who is a psychologist, quite rightly she observed that there is a rift between mind and body and there is room for some healing there. I know I need to forgive my body.
I have been told to imagine that with regards to my pain management I have a tool box and at the moment that tool box is pretty much empty. Apart from my pain killers (which I don't like taking!) Over the course of the next few months we will be adding a variety of tools to that tool box so when I do feel overwhelmed by the pain I have a whole host of tools to chose from. In that sense, life really can only get better.
Last weekend my husband had the whole weekend off (HOORA!) and we decided we were really going to 'make the most of it'. Our local children's centre runs a group every other Saturday called 'Saturdads' which Tony has always enjoyed taking our daughter along too (Whilst I'm sure firstly it is because it is such a nice bonding experience between father and daughter I am quite sure the bacon sarnies play a role also!) Due to the nature of Tony's work he works almost every weekend so isn't able to take her consistently but whenever he is off they always make the effort to go.
I used the time to sit and make some bread, I've really thrown myself back into making bread because of the great sense of satisfaction it brings me. Unfortunately because of the pain in my hands I am unable to beat the c**p into the dough as perhaps once I would (any frustrated bread maker will relate with this!) but because my wonderful man brought me a fantastic food mixer (with dough blade!) for Easter bread making is not beyond me.
In the afternoon we went to our local farm shop and after a mooch about and a cup of tea we sat outside for an hour. I sat watching the chickens and talking at Tony about animal welfare and responsible food sourcing (these were very happy chickens I might add!) and Amelia-Rose played on the climbing frame. I say talked 'at' rather then talked 'to' because I'm really not sure how much went in. Poor Tony has learnt to put up with me and my ethical food shopping rant!
I was absolutely exhausted by the time we got home so what on earth possessed me to decide that was 'the' time to make a shepherds pie for the freezer is beyond me. Needless to say it ended in tears. Tears of sheer exhaustion! I wasn't especially sad just so so tired.
I don't like referring to what I experience as 'tired'. Tired is having a few bad nights sleep, this is every part of my body feeling like lead. I feel as if someone has literally sucked all the energy out of me and even thinking is too much. The cruel thing is though is that it's a 'tiredness' that does not allow you to sleep. It keeps you awake for hours through the night!
On Sunday Amelia-Rose and I went blackberry picking with a friend of mine and her daughters then we went back to her house to tea. There are people in life who just do your soul good and this friend is definitely one of those people. We had to take my mobility scooter but she never once made that feel like a problem. She completely accepts me as I am and I don't think she'll ever be able to grasp how much that means to me. It was such a wonderful afternoon followed by the most amazingly scrummy dinner. Sometimes when you're in a dark cave you find a diamond and she is definitely one of my diamonds.
For a while now I have been getting the most horrendous headaches and am experiencing constantly blurred vision and black spots which descend into my vision at the most inconvenient times! It's one of the reasons I have been enable to update for so long! On Monday I went to the optician expecting I would just get a prescription for glasses as I should be wearing them for reading anyway (I say 'should' because the last prescription I got 3 years ago I never filled. Bad Chloe!) The optician confirmed that my vision is blurred and 'not what it should be' and I do need a slight prescription but the problem isn't being caused by my eyes and he didn't write me the prescription.
This is something I should be able to take in my stride but I didn't. By the time I got home I was so worked up I rang my mum and cried down the phone for almost an hour. My brain was letting me 'feel' about my situation and holy moly did it hurt. I have been in very deep shock since my appointment in London but every now and again the enormity sets in and I am devastated, earth moving, world shattered devastated. I was furious with my body once again for not being straight forward. For most people if you have trouble with your vision you go to see an optician and get glasses but of course, no, my body would never allow something so straight forward. I feel like my body has let me down in the most cruel way. In my soul lays a free spirit desperate to dance, skip and celebrate her way through life but she dwells in a broken body. I read this quote recently and it sums up exactly how I feel "I got my head together and my body fell apart".
I could not write this blog honestly without discussing the emotional hurt that this disability has brought with it. Until 4 weeks ago I very rarely cried about my hips, I think I was afraid if I started I would never stop. Now though, I cannot control it. Out of nowhere I will find myself head down sobbing into whatever it is I happen to be doing.
On Tuesday for example, Tony drove me up to collect our daughter from school and I was doing ok. That is until I looked in the rear view mirror and saw him getting the wheelchair out the boot. With no warning the tears set in and I felt the darkness surrounding me. I don't want to be in a freaking wheelchair. I want to be like every other parent in the playground STANDING PAIN FREE to collect their child from school. I don't want the 'looks' and silent wonderings. I want to be WELL and Lord knows Amelia-Rose deserves to have a mother who can run along splashing in the puddles with her.
People think I am coping so well and generally yes I do. I have all my life had a sense of every hardship being there to prepare for something that is yet to come. We all have difficult times and I have always had a 'feeling' that one day everything would become clear and fall into place. That belief gives me a strength to always keep moving forward. Now though, I don't know. I am so tired of 'fighting' and 'getting through'. I just want someone to lay me down and let me rest. This has been going on such a long time now. When inner strength shouts 'This isn't it, there is more to come you just wait and see' I have become aware of the sound of despair 'Pain and exhaustion are your life now'.
I am now being seen by our local pain management clinic and I am very hopeful that together that partnership will give me some of my Chloe fight back. I have had two appointments now and each one has left me with a huge sense of hope. I have another in two weeks time. The lady I see is so very kind and compassionate. I can tell she really 'gets' it and is so affirming of how I feel. Yesterday she explained to me that because of the HMS my nervous system really does respond differently to pain, she said "Imagine most people have a cheap car alarm response to pain... well you have a Ferrari alarm" this perfectly summed up for me why I feel my pain is out of proportion. For example, last weekend I woke up with the tiniest cut in the corner of my mouth, through the week it became a little ulcer and whilst it is still that small little ulcer I honestly feel like someone has slapped me on the side of my face. The entire left side of my face is stinging. Ferrari alarm.
When I see her again in two weeks we are going to work on some relaxation techniques that she thinks I will find useful as I prefer a holistic approach to life. I am also going to start seeing her colleague who is a psychologist, quite rightly she observed that there is a rift between mind and body and there is room for some healing there. I know I need to forgive my body.
I have been told to imagine that with regards to my pain management I have a tool box and at the moment that tool box is pretty much empty. Apart from my pain killers (which I don't like taking!) Over the course of the next few months we will be adding a variety of tools to that tool box so when I do feel overwhelmed by the pain I have a whole host of tools to chose from. In that sense, life really can only get better.
Brain fog
Just a quick post today because I really want to try to capture how this feels.
I am having the worst experience of brain fog to date and it's really horrible.
Today started badly because I left the house at 9am and my mobility scooter broke down at the top of the road. I was half on and half off the path as we had just crossed the road and the thing went completely dead. Fortunately an off duty policeman was on hand to help move it! I rang my Dad and he came to meet me and pushed the blasted thing home but it meant I had to walk. It's a very short disance that would take the average joe 2 minutes but took me on my crutches over 10. It REALLY highlighted how bad my mobility has become.
Anyway some when the brain fog hit and it's gripped me all day.
So what does this brain feel fog feel like?
Imagine, if you can the way noise sounds when you're under water, your hearing is muffled yet extrememly sensitive and everything seems louder. Nothing sounds crisp as it should.
Now let your eyes rest on something and fall slightly out of focus, its a small difference but everything appears out of focus and if you move your eyes too quickly you feel dizzy.
Your thoughts feel all over the place and slow, like your brain is working in slow motion and yet life continues at the normal pace around. It feels as if you are drifting out of your body and your brain isn't quite attached right. Sentences are hard and you can be mid sentence, sometimes mid word and you completely forget what you're saying. You don't just lose your train of thought you completely forget.
Imagine trying to concentrate but just not being able to perhaps in the way one does when they are drunk.
And it feels like all your muscles are tingling, it isn't pain but it isn't pleasant.
I had unavoidable shopping to do today and being in town feeling like this was really quite distressing, I could feel my heart beat in my throat! I felt like a rabbit caught in headlights.
Now, if you can, imagine all the both, let the creation of this feeling absorb you... now smile and tell people that you're ok.
I am having the worst experience of brain fog to date and it's really horrible.
Today started badly because I left the house at 9am and my mobility scooter broke down at the top of the road. I was half on and half off the path as we had just crossed the road and the thing went completely dead. Fortunately an off duty policeman was on hand to help move it! I rang my Dad and he came to meet me and pushed the blasted thing home but it meant I had to walk. It's a very short disance that would take the average joe 2 minutes but took me on my crutches over 10. It REALLY highlighted how bad my mobility has become.
Anyway some when the brain fog hit and it's gripped me all day.
So what does this brain feel fog feel like?
Imagine, if you can the way noise sounds when you're under water, your hearing is muffled yet extrememly sensitive and everything seems louder. Nothing sounds crisp as it should.
Now let your eyes rest on something and fall slightly out of focus, its a small difference but everything appears out of focus and if you move your eyes too quickly you feel dizzy.
Your thoughts feel all over the place and slow, like your brain is working in slow motion and yet life continues at the normal pace around. It feels as if you are drifting out of your body and your brain isn't quite attached right. Sentences are hard and you can be mid sentence, sometimes mid word and you completely forget what you're saying. You don't just lose your train of thought you completely forget.
Imagine trying to concentrate but just not being able to perhaps in the way one does when they are drunk.
And it feels like all your muscles are tingling, it isn't pain but it isn't pleasant.
I had unavoidable shopping to do today and being in town feeling like this was really quite distressing, I could feel my heart beat in my throat! I felt like a rabbit caught in headlights.
Now, if you can, imagine all the both, let the creation of this feeling absorb you... now smile and tell people that you're ok.
Moving along the road
Well yesterday was a good day which is a funny sort of statement because I cried A LOT. That sort of can't talk through it crying. But it's ok, everybody needs to release that sometimes and it was all triggered by kindness not nastiness.
I had my first appointment with the new pain management clinic which has been a long time coming. I did attend a pain clinic in November 2012 but the service got axed before I was able to receive any treatment and I've been flying solo ever since.
The lady I saw was absolutely incredible. It was a type of compassion that I've not ever really experienced before on the NHS and it really touched me. We spoke about everything from the way the pain feels to the way it makes me feel (two very different things). The sense that this woman actually really did care and did really want to help enabled me to be honest to a point that I normally never let myself engage with.
The enormity of the change between life B.P (before pain) and now is so huge I rarely let myself contemplate it. Every now and again I will dip my toes into the pool of emotion but I have never trusted myself to fully submerge in it for fear I will drown. Today, for the first time I really let myself feel that emotional tidal wave and guess what... I was able to ride it out!
Due to the complexity of my pain we will need to have another appointment before we can begin to talk 'coping strategies' but I really truly believe when I look back on my life today will be the beginning of good health related things.
One of the things I hear quite often from people that really try to understand my life (the ones who identify that 'just nipping out' without planning is out of the question, cooking dinner is a bit of a mission because I need my hands to walk, those day to day things that one would normally do without thinking) is 'How are you so positive?' and I always find it a funny question. How am I so positive? How could I not be! Am I really expected to believe that this is it? There's too many wonderful things in my life to 'give in' to the pain and disability.
Every life is purposeful. No one is here 'Just because'. Every tear drop we lose I believe is replaced by a drop of strength, a drop of resilience that helps us move forward, to take the next step into the unknown with a sense of purpose.
I am so abundantly blessed in my life and whilst pain is a part of my life I refuse to let it be my entire life. In my very darkest hours of pain when the loneliness of insomnia creeps in and I completely irrationally think 'This is it, this is actually going to kill me' (There is a point that I reach when, as absurd as it sounds, I think I am in so much pain my body couldn't possibly survive. I know, I know, it's ridiculous) that there is the echo of a voice saying 'No it's not you can do this'. I am a mother, a wife, a daughter, a sister and a friend and that gives me purpose.
Even in the darkest of dark you can't hide a light.
I also take the greatest of pleasure in the smallest of things. For example, little vegetarian me made a steak and kidney pie for my husband for dinner last night and it just made me feel good inside. Flowers make me smile, a new pack of biro pens excite me and a smile from a stranger makes me believe in the human race. I adore the changes of the seasons. There are so many wonderful beautiful things in this world. In this life. I would be a fool if I let my pain take that away from me.
Be blessed x
I had my first appointment with the new pain management clinic which has been a long time coming. I did attend a pain clinic in November 2012 but the service got axed before I was able to receive any treatment and I've been flying solo ever since.
The lady I saw was absolutely incredible. It was a type of compassion that I've not ever really experienced before on the NHS and it really touched me. We spoke about everything from the way the pain feels to the way it makes me feel (two very different things). The sense that this woman actually really did care and did really want to help enabled me to be honest to a point that I normally never let myself engage with.
The enormity of the change between life B.P (before pain) and now is so huge I rarely let myself contemplate it. Every now and again I will dip my toes into the pool of emotion but I have never trusted myself to fully submerge in it for fear I will drown. Today, for the first time I really let myself feel that emotional tidal wave and guess what... I was able to ride it out!
Due to the complexity of my pain we will need to have another appointment before we can begin to talk 'coping strategies' but I really truly believe when I look back on my life today will be the beginning of good health related things.
One of the things I hear quite often from people that really try to understand my life (the ones who identify that 'just nipping out' without planning is out of the question, cooking dinner is a bit of a mission because I need my hands to walk, those day to day things that one would normally do without thinking) is 'How are you so positive?' and I always find it a funny question. How am I so positive? How could I not be! Am I really expected to believe that this is it? There's too many wonderful things in my life to 'give in' to the pain and disability.
Every life is purposeful. No one is here 'Just because'. Every tear drop we lose I believe is replaced by a drop of strength, a drop of resilience that helps us move forward, to take the next step into the unknown with a sense of purpose.
I am so abundantly blessed in my life and whilst pain is a part of my life I refuse to let it be my entire life. In my very darkest hours of pain when the loneliness of insomnia creeps in and I completely irrationally think 'This is it, this is actually going to kill me' (There is a point that I reach when, as absurd as it sounds, I think I am in so much pain my body couldn't possibly survive. I know, I know, it's ridiculous) that there is the echo of a voice saying 'No it's not you can do this'. I am a mother, a wife, a daughter, a sister and a friend and that gives me purpose.
Even in the darkest of dark you can't hide a light.
I also take the greatest of pleasure in the smallest of things. For example, little vegetarian me made a steak and kidney pie for my husband for dinner last night and it just made me feel good inside. Flowers make me smile, a new pack of biro pens excite me and a smile from a stranger makes me believe in the human race. I adore the changes of the seasons. There are so many wonderful beautiful things in this world. In this life. I would be a fool if I let my pain take that away from me.
Be blessed x
Fork in the road
New path, new dawn, new chapter, new blog! Tada!
Here comes the fork in the road, there we were travelling along, eyes fixed firmly on the horizon and then, what do you know, BANG, suddenly, head spinning I have no idea where it is I'm going and how the heck I got here!
I guess I should probably share where 'Here' is. 'Here' is sitting in a Doctors office in London a long way from home being told that no, actually I don't have 'classic' Hip Dysplasia (which would be operable) I do have a deformity within the hip joints but he suspects what is causing the chronic pain I live with and all the semi dislocations I experience several times a day is Hypermobility Syndrome. Hypermobility Syndrome that can be 'managed' but there is no easy surgical solution. This is a new road now and not the road I was on half an hour ago before the appointment so please excuse me whilst I reach for the travel sickness bands but this journey is making me feel a bit queasy.
I have spent the last 6 months so focused on the idea of surgery and 'getting better' so although the consultant was one of the kindest Doctors I've ever seen I feel a little winded and utterly devastated. It takes me a little over a week to compose myself and discover that 'here' is actually an ok place to be.
Fortunately I have the most supportive husband on the face of the planet and the more we read about Hypermobility syndrome the more everything falls into place. We might as well be reading my medical history.
So for a crash course in Hypermobility syndrome hold on to your hat...here we go.
Hypermobility is perhaps best described as having excessive movement in any joint, thus making it move above and beyond what would be considered normal. Hypermobility Syndrome however is 'symptomatic' and frequently causes pain. For a gymnast Hypermobility would be a bit of perk however Hypermobility syndrome would almost definitely be problematic. Hypermobility Syndrome is a connective tissue disorder caused by faulty collagen and causes the sufferer a whole host of other complications.
The list of symptoms is enormous so I've been slightly selective in what I'll share however for further reading I would point you in the direction of the Hypermobility Syndrome Association which can be found here http://hypermobility.org/ One thing I am fascinated by are the more abstract symptoms, the things that I thought were just 'me' but, so it seems, are not!
Recurrent joint dislocations or semi dislocations (along with shallow joints)
Chronic pain
Fatigue (One thing I've learned about Fatigue is that it is not 'just' feeling tired, this is every part of your body, every fibre of your being, every cell feeling exhausted!)
Stretchy fragile skin that takes longer then 'normal' (there's that word again) to heal
Stretch marks
Clicky joints
Hip dysplasia
Early onset arthritis
Growing pains
Cramps
Tendonitis
Strained ligaments
Muscle fatigue
Clumsiness
Over-sensitivity (of nerves)
Poor reflexes
Mental clouding (or brain fog! Some might call them senior moments, just, not so senior when you're in your 20's!)
Changes in temperature
Difficulties swallowing
Indigestion
Bowel 'issues', symptoms associated with IBS
Asthma
Increased need to pee
Menstrual pain (think, 'I would rather be in labour then going through this' and yes, I am a mother, and yes, she was a BIG baby! Oh and did I mention I only had gas and air for the last hour of bringing her into the world?!)
Difficulties conceiving
Increased chance of having endometriosis
Anxiety
Depression
Insomnia
Memory loss
Patients don't respond to general or local anathestics as well and often need a higher dose, sedations also aren't as effective if effective at all.
The body doesn't respond 'normally' to pain medication meaning whilst they bring the pain down to a more manageable level the person is not left with complete pain relief.
A tendency to 'talk with your hands'
There are so many more symptoms but it would take me hours to list them all so I thought for now I would stick to the ones that I experience. Yup. That's me. All of the above.
Life hasn't always been this way. I remember the days B.P (before pain) I loved the life my husband and I had created. I was a content stay at home mother, I adored spending every day with our beautiful daughter. We would spend our days baking, crafting, playing, going on long nature walks, cooking, growing, digging, running, spinning, splashing, shopping and dancing. I adored motherhood and I was blessed enough to have a husband who worked so hard to enable me to stay at home so our daughter didn't have to go into childcare.
Everyday we would go into our wonderful town centre, we'd visit the butchers, the grocers, the bakers and off we went, home again. Living this spectacular traditional life that worked for us. I took great pride in our life. I really felt like we had it 'right'. The main thing was that our daughter was happy.
Then 18 months ago I started to experience pain in my right hip. After a few weeks of this niggling pain turning into a hot poker kind of pain I went to see the nurse at my local medical centre. I was put on crutches and given antibiotics told that it was likely an infection within my hip socket. After a week of semi bed rest it did feel as if things had improved. I came off the crutches and went back to life. The hot poker pain had calmed back to the niggle. Sadly that didn't last long and I was back at the Drs, back on the crutches and this time having an xray and being referred to consultants. It felt like everyday the pain was getting worse and it really knocked me for 6.
Countless x-rays, 2 MRI scans and weekly hospital appointments for the entire summer of 2012 left me being told I had a 'significant labral tear' and would need to be referred to Reading hospital (3 hours from home) as my local hospital had the Dr to do the surgery but not the funding for the equipment that they needed.
I'm not going to dwell too much on the next four months because they were some of the hardest of my life. The pain by this point was off the chart and I was on a cocktail of really heavy really nasty pain killers that had horrendous effects on my state of mind. Along with the horrible side effects of the pain relief I was also beginning to mourn the life I had lost touch with.
In October 2012 I had surgery on my right hip, along with the labral tear I also had a mass of bone removed and my soft tissue reattached. If anything else it explained why I had been in so much agony. The surgeon was fantastic, the hospital was not and I left traumatised. Literally traumatised.
I was told I had Hip dysplasia in both hips. During my recovery period the 'clicks' within my hip increased to a frequency that actually excelled what they were before my operation and Reading told me they could do no more and I would need to go to London for an operation called a 'Periacetabular Osteotomy'. It's a major operation that takes a lot of consideration but it would eventually give me my life back!
After waiting months for the referral to come through, all the time living with this pain and missing being the woman I use to be my husband and I decided to book a private appointment to see the Dr we were told I needed to see. It was a huge decision for us because of the financial implications but over the past 18 months I hadn't had the best experiences in hospitals and I needed for my own sanity to see this Dr quickly and ask all the questions I needed to ask without feeling like I only had a 10 minute appointment and that was my lot. (I still haven't had that NHS referral come through...5 months on!)
And that's it. Here we are. New path, new dawn, new chapter, new blog.
Be blessed.
x x
Here comes the fork in the road, there we were travelling along, eyes fixed firmly on the horizon and then, what do you know, BANG, suddenly, head spinning I have no idea where it is I'm going and how the heck I got here!
I guess I should probably share where 'Here' is. 'Here' is sitting in a Doctors office in London a long way from home being told that no, actually I don't have 'classic' Hip Dysplasia (which would be operable) I do have a deformity within the hip joints but he suspects what is causing the chronic pain I live with and all the semi dislocations I experience several times a day is Hypermobility Syndrome. Hypermobility Syndrome that can be 'managed' but there is no easy surgical solution. This is a new road now and not the road I was on half an hour ago before the appointment so please excuse me whilst I reach for the travel sickness bands but this journey is making me feel a bit queasy.
I have spent the last 6 months so focused on the idea of surgery and 'getting better' so although the consultant was one of the kindest Doctors I've ever seen I feel a little winded and utterly devastated. It takes me a little over a week to compose myself and discover that 'here' is actually an ok place to be.
Fortunately I have the most supportive husband on the face of the planet and the more we read about Hypermobility syndrome the more everything falls into place. We might as well be reading my medical history.
So for a crash course in Hypermobility syndrome hold on to your hat...here we go.
Hypermobility is perhaps best described as having excessive movement in any joint, thus making it move above and beyond what would be considered normal. Hypermobility Syndrome however is 'symptomatic' and frequently causes pain. For a gymnast Hypermobility would be a bit of perk however Hypermobility syndrome would almost definitely be problematic. Hypermobility Syndrome is a connective tissue disorder caused by faulty collagen and causes the sufferer a whole host of other complications.
The list of symptoms is enormous so I've been slightly selective in what I'll share however for further reading I would point you in the direction of the Hypermobility Syndrome Association which can be found here http://hypermobility.org/ One thing I am fascinated by are the more abstract symptoms, the things that I thought were just 'me' but, so it seems, are not!
Recurrent joint dislocations or semi dislocations (along with shallow joints)
Chronic pain
Fatigue (One thing I've learned about Fatigue is that it is not 'just' feeling tired, this is every part of your body, every fibre of your being, every cell feeling exhausted!)
Stretchy fragile skin that takes longer then 'normal' (there's that word again) to heal
Stretch marks
Clicky joints
Hip dysplasia
Early onset arthritis
Growing pains
Cramps
Tendonitis
Strained ligaments
Muscle fatigue
Clumsiness
Over-sensitivity (of nerves)
Poor reflexes
Mental clouding (or brain fog! Some might call them senior moments, just, not so senior when you're in your 20's!)
Changes in temperature
Difficulties swallowing
Indigestion
Bowel 'issues', symptoms associated with IBS
Asthma
Increased need to pee
Menstrual pain (think, 'I would rather be in labour then going through this' and yes, I am a mother, and yes, she was a BIG baby! Oh and did I mention I only had gas and air for the last hour of bringing her into the world?!)
Difficulties conceiving
Increased chance of having endometriosis
Anxiety
Depression
Insomnia
Memory loss
Patients don't respond to general or local anathestics as well and often need a higher dose, sedations also aren't as effective if effective at all.
The body doesn't respond 'normally' to pain medication meaning whilst they bring the pain down to a more manageable level the person is not left with complete pain relief.
A tendency to 'talk with your hands'
There are so many more symptoms but it would take me hours to list them all so I thought for now I would stick to the ones that I experience. Yup. That's me. All of the above.
Life hasn't always been this way. I remember the days B.P (before pain) I loved the life my husband and I had created. I was a content stay at home mother, I adored spending every day with our beautiful daughter. We would spend our days baking, crafting, playing, going on long nature walks, cooking, growing, digging, running, spinning, splashing, shopping and dancing. I adored motherhood and I was blessed enough to have a husband who worked so hard to enable me to stay at home so our daughter didn't have to go into childcare.
Everyday we would go into our wonderful town centre, we'd visit the butchers, the grocers, the bakers and off we went, home again. Living this spectacular traditional life that worked for us. I took great pride in our life. I really felt like we had it 'right'. The main thing was that our daughter was happy.
Then 18 months ago I started to experience pain in my right hip. After a few weeks of this niggling pain turning into a hot poker kind of pain I went to see the nurse at my local medical centre. I was put on crutches and given antibiotics told that it was likely an infection within my hip socket. After a week of semi bed rest it did feel as if things had improved. I came off the crutches and went back to life. The hot poker pain had calmed back to the niggle. Sadly that didn't last long and I was back at the Drs, back on the crutches and this time having an xray and being referred to consultants. It felt like everyday the pain was getting worse and it really knocked me for 6.
Countless x-rays, 2 MRI scans and weekly hospital appointments for the entire summer of 2012 left me being told I had a 'significant labral tear' and would need to be referred to Reading hospital (3 hours from home) as my local hospital had the Dr to do the surgery but not the funding for the equipment that they needed.
I'm not going to dwell too much on the next four months because they were some of the hardest of my life. The pain by this point was off the chart and I was on a cocktail of really heavy really nasty pain killers that had horrendous effects on my state of mind. Along with the horrible side effects of the pain relief I was also beginning to mourn the life I had lost touch with.
In October 2012 I had surgery on my right hip, along with the labral tear I also had a mass of bone removed and my soft tissue reattached. If anything else it explained why I had been in so much agony. The surgeon was fantastic, the hospital was not and I left traumatised. Literally traumatised.
I was told I had Hip dysplasia in both hips. During my recovery period the 'clicks' within my hip increased to a frequency that actually excelled what they were before my operation and Reading told me they could do no more and I would need to go to London for an operation called a 'Periacetabular Osteotomy'. It's a major operation that takes a lot of consideration but it would eventually give me my life back!
After waiting months for the referral to come through, all the time living with this pain and missing being the woman I use to be my husband and I decided to book a private appointment to see the Dr we were told I needed to see. It was a huge decision for us because of the financial implications but over the past 18 months I hadn't had the best experiences in hospitals and I needed for my own sanity to see this Dr quickly and ask all the questions I needed to ask without feeling like I only had a 10 minute appointment and that was my lot. (I still haven't had that NHS referral come through...5 months on!)
And that's it. Here we are. New path, new dawn, new chapter, new blog.
Be blessed.
x x
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