Monday, 11 May 2015

My Life and Pain

Way back to when I was a little girl I can remember pain.  I would wake in the night and cry, waking up my parents. The pain would be in my legs, my knees or my ankles. Occasionally it would be in my neck or shoulders. I know that mom had taken me to see the Doctor because she always said that she'd been told it was growing pain. Then later, it was cramp. I think at times she thought I was just attention seeking, especially after my baby brother was born. Then my Dad passed away. I decided not to complain so much, mom had other things to worry about. I did lose a lot of time from school though, I didn't always say it was pain in my legs, sometimes it was tummy ache or headache.

Most days  I felt okay. I would play with my friends, I would run and walk with no problems. If I did too much then I would find sleep difficult but I didn't actually make the connection back then. The more I'd done in the day, the worse I felt at night.

I've always been double jointed, or hypermobile as they like to call it these days. Still, I wondered why I could be so bendy yet so rubbish at gymnastics. I had no balance, no poise, no grace. I was always falling over. My body is the wrong shape, my limbs are too long. I found quite early on that I could pop joints, as a child I developed a tic where I was popping my shoulder out, I became addicted to loud click it would make. The pain was addictive too in a strange way. I managed to stop myself when the kids at school started commenting. I can still do it now, but it hurts more. 

As an adult I have managed okay. I've worked full time, sometimes doing quite strenuous jobs. With one job I was on quite strong painkillers from the GP when I did some damage lifting. 

My pregnancies have been painful, but I honestly believed that everyone felt that way. Surely most women felt that their bones where going to break carrying that extra weight around, their legs ached every night and they never felt comfortable, they found it difficult to even get dressed, just like I did. With my third child I felt the horrifying crunch of my pelvis and was diagnosed with SPD, I could barely walk. I had an epidural with my first child, it didn't work. I never bothered again. 

Going to the dentist has always been a nightmare. I stopped going when they stopped offering gas. I said it was because I didn't like needles. I don't mind needles, they bruise me something terrible, but I'm not afraid of them. The anaesthetic at the dentist never worked but they didn't believe me. They thought I was just being silly. Then I had a good dentist who made sure I had enough anaesthetic, which was at least twice as much as normal. The only thing I've not been able to have is a root canal filling, it was less painful to have the tooth extracted. 

In my mind I believe that I don't complain much about my pain. I try to hide it as often as I can. My family will disagree, they think I'm always ill, I've even been accused of being addicted to painkillers. I try not to take them unless I really have to. If they knew how much I do hurt all the time they probably wouldn't believe me anyway, who would? Who can possible hurt so much without having some serious disease. Surely it must all be in my head?

Lately the pain has spread. I now get pain in my hands and wrists. In the past the pain in my upper body has been limited to my neck and shoulders. I've been to the GP who tested me for Vitamin D deficiency and I was borderline. Now I'm taking Vitamin D for three months before he will check anything else. I'm not sure he will find anything.

My little girl has been diagnosed with Elhers Danlos Syndrome, something I'd not even heard of a year ago. Her diagnosis was based on her hypermobile joints, her pain and because she subluxed her cervical spine and they had trouble fixing it because her ligaments were too lax. Elhers Danlos Syndrome is a connective tissue disorder, the tissues are too lax and the joints can sublux, or pop out. Symptoms of EDS include having difficulty with anaesthetics and easy bruising, sufferers can also have problems with their teeth and gums. Other symptoms that both myself and Star have are gastro problems, headaches and sleeping problems. I also have dizzy spells and brain fog. 

Other things taken into consideration when diagnosing someone with EDS is their family history. Both myself and Star's older sister have symptoms. 

I don't have an official diagnosis, but Star's doctor believes that I have EDS too. For the first time in so many years I can actually put a name to why I feel so much pain. It's not all in my head. I will still go on hiding it as much as I can though, It hasn't beaten me yet, it sure isn't going to now.

This month is Elhers Danlos Syndrome Awareness month, if you wish to find out more about the condition please visit http://www.ehlers-danlos.org

I you are wondering why on earth I am doing the Race for Life then I can tell you I was inspired by the amazing Lara Bloom and you can find her story on YouTube in Issues With My Tissues


20 comments:

  1. I can't imagine what it must be like to have a life with so much pain. Hope you get some answers soon.

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  2. I can not imagine living with such pain for years and no one believing you. I hope the fact that Star has a diagnosis means that she is treated better

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  3. I cant imagine what it must be like to live with pain for years. I hope you get all the answers and help you both deserve x

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  4. That must be so hard for you, I'm so sorry that you and your family have suffered like this. I really hope that your doctor can help you to feel better.

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  5. That must be so nice to finally be able to put a name to it and prove it wasn't just you. Poor you having to go through years of suffering. I hope you can start getting help.

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  6. It must be awful living with chronic pain all the time. I hope now you have a diagnosis you will get the help you need.

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  7. This is a really interesting post - I am hypermobile as well and so in some ways feel your pain, I could tick off all the issues mentioned as well, though some can be attributed to Fibro.

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    1. That's interesting Sarah, because before I heard of EDS I did think that maybe I had fibro. I've never really complained at the GPs much, but now that I'm losing my hands and fingers it's really getting to me. I can survive a day without walking, but not without using my hands.

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  8. Both my daughter, one son and I have hypermobility. Thankfully it doesn't affect us too badly but I have a very week left leg

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  9. I didn't know much about Elhers Danlos, in many ways some of the symptoms are like what my son has who has autism with the gut, sleep and brain fog. Also the hypermobility as often can be the case although not to the same extent. It certainly must make you wonder with your daughter's diagnosis is this is what you have struggled with all this time. My son's autism has done the same with me. I hope you can get some answers soon and good luck for your run.

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    1. Many believe there is a connection between autism and EDS, or maybe just that a lot of people have both. My daughter was diagnosed high functioning autism at aged 6, when she was also diagnosed hypermobile.

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  10. Living with the pain but be an absolute nightmare, though I am glad you have a diagnosis so you can get some help and support x

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  11. so sorry for the pain and the misjudgement others have had on you , hope things gt better

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  12. Hope things are getting better / will get better People should not judge xx

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  13. It is so difficult not knowing the cause behind something. Maybe now you have a diagnosis (or a fair idea what it might be), you can start the healing process xx

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  14. Its sad that you had to wait so long too find out about the pain. I hope the diagnosis will enable you to get some relief.

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  15. I can not imagine how hard it is not having others belief or know what is wrong. Sending lots of love

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  16. EDS must be such a difficult thing to live with. Good for you to get answers though, now hope you get more help x

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  17. Oh how awful. My friends husband is in a lot of pain, most of the time, it is very difficult to live with. I hope it is getting better. Kaz x

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  18. How awful. I watched the film Cake the other day and it made me so grateful to suffer like that. Back in january, i had a tooth abscess and the pain had me in tears. I would wake up in the night googling how to get rid of the pain. I just didn't know what to do with myself. x

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It is so nice of you to stop by my blog, I would love for you to leave a comment too. I will reply to as many as I can and if you are a blogger you can expect a return visit from me. Many thanks, Anne xx

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