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Madwife

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    Hi all! I was diagnosed with P.O.T.S / V.V.S / C.F.S and Seizures in 2001.<br />I am also a senior midwife but even as one of those dreaded health professionals you would be amazed at the amount of discrimination I too recieve from fellow colleagues and those supposed to be helping me, due to their lack of understanding about the condition.<br />However on the positive side I am fortunate in that I have struggled through three cardiac arrests and paralysis to keep hold of my career and I manage to live independently.

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  1. Hi Jacqui, Just to let u know Cyclizine is also known as Valoid. Some other good ones are: - Promethazine Hydrochloride -Chlorpromazine Hydrochloride -Metoclopramide Hydrochloride aka Maxalon -Odanestron aka Zofran Hope this helps x
  2. Angela, Sorry to hear your not feeling great, however in my professional opinion I agree that a lumbar puncture should not cause a pyrexia (fever) if the correct aseptic procedure was followed. Take care x
  3. Melissa so sorry to hear your not feeling great, keeping you in my thoughts and prayers x
  4. I'm a midwife!! It was actually during my midwifery finals that I first collapsed and ended up in hospital for nearly 4 months after continouos seizures, cardiac arrest, e.t.c. and was finally diagnosed. It took a fight and a lot of determination to return to my midwifery and indeed at times it has been one constant fight to keep hold of my career but I have done so and intend to keep proving them wrong. There is only one ward on which i find it impossible to work and this is due to the ergonomics of the ward more than anything, i.e. beds too close together to enable me to get in a chair to the bedside for use when assisting with breastfeeding. I do have my own chair, baby changing station, stool that were provided for me by disabled access at work which all help a great deal in enabling me to get through a shift with as little pain as possible and remain standing!!! There are other restrictions to do with hours that are placed upon me by occupational health but these are for my benefit and stop managers trying to constantly push you too hard. My main battle has been trying to gain understanding and prove that I am fit too work and am not a complete freak as some seem to think ( Yes it's quite sad that particularly colleagues with a medical background who should know better can still treat you this way). At the end of the day it's being able to maintain this form of independence that keeps me sane and I consider myself so lucky that I am able to do this. I admit that the majority of times life does just consist of work and bed but it's worth it. Good luck to you for the rest of your studies and hopeful future career.
  5. Whoops hit the wrong button, half way through a night shift and can no longer see straight! As I was saying they think I may have AMYLOIDOSIS which is a protein that deposits upon the nerves and causes the damage, if this is the case then it will likely require chemotherapy and possible stem cell transplant. Anyway I find out the results on 31st October, so keep your fingers crossed for me please. Is interesting to see just how many of us have developed some form of sensory neuropathy, there has got to be a link somewhere. Anyway take care x x
  6. Hi Guys, I too have peripheral neuropathy, which has gradually got worse over the past 2yrs. It is worse in my feet where I also experience the intense burning pain. The numbness continues upto around calf level. My hands are 30% affected which is not good for me as I am a midwife so am desperately seeking a cause and hopeful cure or at least stabilisation. My neurologist is under the impression that I may have AMYLOIDOSIS
  7. Hi, I think you should probably get this checked out or at least noted as this is how my peripheral neuropathy started with me just in the toes and I ignored it till it gradually got to a point where over 2 yrs it is now in my feet, lower legs, hands and arms. Nerve conduction studies can confirm wether it is this or not. I am currently undergoing investigation for amyloidosis related to this pain. I hope this resolves for you soon! Take care
  8. My hope and thoughts with ur famiy Julia.
  9. Oh Persephone, I know exactly how u feel...I can always tell when I'm becoming run down as the first thing that tends to kick in is the chronic aching and nerve pain with the M.E side. Does it only occur with hypotension or could it be that u too are becoming run down if u aren't eating and sleeping too well. I know it's really hard for u. I'm sending u big hug but won't squeeze too hard cause it b***** hurts!! I'm just starting my night shift feeling like an eighty year old and walking like i'm drunk, with a support brace on my back in order to try and keep me a bit more upright during the night! lmso! I'll send it ur way when my shift over! U take care babe...I'll keep my eye out foe some caring men to come and give us a gentle massage!!! he he x
  10. Alicia I'm sending u lots of hugs it is so hard, especially when left alone to deal with it all. I know so many women have experienced what we have but it is just that more difficult when u have chronic illness to deal with aswell. Thank u for sharing ur experience with me and ur kindness. I too hope that u will find happiness and that u experience the joy of motherhood when the time is right. For us that time was just not meant to be now, it is hard but we have our little angels up there being cared for untill we can be with them. Take care x
  11. Guys thankyou all so much for your kindness and support it means so much knowing i'm not totally alone. It's a really busy shift here tonight so in some ways it helps not having the time to think too much but it's also very hard. Have not had any sleep today so am struggling POTS wise tonight but I know I will make it through knowing u guys are out there. Once again thank u too everyone who has taken the time to send there hugs. Love u all x x
  12. Roselover thankyou...it helps to know someone is there in spirit with me. I have an hour left of my shift but I know that sleep will not be happening today and I am back in for another 12hrs tonight so dread to think of the POTS hole I'm gonna end up in but I know no way round. Just wish there was someone at home waiting for me to talk to and hug...but there is no one and my family don't live close but I can't talk tothem no more as they can't understand why I have not got over this. Maybe i have made this into more of a drama than it should be to them but it hurts me beyond belief and I don't think I will ever forgive myself.
  13. Hi all, I'm so sorry to come on and moan as I know we all have our hardship's but I am really struggling emotionally today and jus need some of ur guys wisdom to get through... Today is the 4th December the day when my baby would have been due...an unplanned pregnancy and was taking oral contraceptive pill but however I fell pregnant. At 16 wks pregnant I found that the baby had suspected severe spina bifida as a likely result of some of my medication, and with a history of previous cardiac arrests I was told it was unlikely that I would reach 24wks gestation without a further cardiac arrest, obviously putting both my own and my baby's life at risk...I was therefore strongly advised to terminate the pregnancy. This was the hardest decision I have ever had to make in my life but after hard consideration of all the factors such as my illness, the fact that I was now on my own as my partner walked out on me upon finding out I was pregnant, and the possible difficulties that my baby would face I took the decision to terminate. It was a decision that broke my heart and sent me back into depression. I am sitting here tonight in the midst of a night shift working as a midwife looking at all the beautiful babies that surround me and I just want to scream and run. I am so privilleged to have been able to maintain my dream and return to working as a midwife, when i know so many of u are bed/housebound and I do know how lucky I am but I am finding it really hard. I still feel so guilty about my decision and feel I have no right to wonder what if...but I do. I so long to be a mom and tohold my baby in my arms but i don't know it is something I will ever deserve. I just feel so lonely.......
  14. As ever Persephone u are an inspiration, and I am so glad that u have somewhere and someway of escaping our POTS hole once in a while and can find the true happiness u deserve!!!
  15. Hi Sue! Sorry to meet u this way but I can assure u that this is a great place for support and understanding. I'm Zoe, also in the UK! Sorry to keep this short and sweet but feelin rough tonight trying to struugle through a night shift at work but just wanted to say hi and welcome!
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