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Post by jmontan27 on Jan 30, 2007 20:59:30 GMT
I've toyed with the idea of starting a diary for a while now, but at the back of my mind thought "there's not much point since any day now I'll wake up feeling better and things will be back to normal". Well, things haven't felt "normal" for several weeks and if anything, sometimes I think they're getting worse.
I first started feeling unwell a couple of months ago. I'd had a nasty bout of mastits (my second in a month) and while antibiotics seemed to get rid of the infection, I still felt incredibly shaky and under par. I then noticed that both my arms felt weak - even picking up a knife and fork felt tiring. Then I started feeling like I was tremoring inside. Externally, no one could see anything, but I felt really rough. At about this time, I heard that someone I'd known as a child, but hadn't seen in 20 years, had been diagnosed with leukaemia. This seemed to trigger something in my brain and for a few days I thought I too must have this awful disease. However, the shaking and tremoring didn't seem to tally with this and I began to think I was suffering from another disease. Neurological diseases came to mind and now I feel utterly convinced I have motor neuron disease.
This has now taken over my whole life I spend hours each day comparing and checking symptoms on google and have muscle twitching in different parts of my body which is symptomatic of the disease. Three weeks ago I started suffereing panic attacks and couldn't bear to be by myself in the house so I finally went to the GP. He said my symptoms were likely to be caused by anxiety and pnd and wouldn't refer me to a neurologist for tests, although he did do blood tests for other things which were essentially normal. I can't take antidepressants as I'm still breastfeeding and have been referred for CBT.
Every day just seems to be an extension of the last with no let up. I'm so anxious all the time, yet I feel like I can't cry. I can't bear the thought that my children will grow up without a mother. If only the physical symptoms would let up I feel I might then be able to get on with life again, but as it is, they dominate my every thought, even when I'm playing with my children. All I can think is, will I still be alive this time next year? And, if I am, will I still be feeling like this?
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Post by sianyc on Jan 30, 2007 21:36:04 GMT
hi
I didn't get the physical symptoms of pni so I'm not so hot with the advice. I just wanted to say that you're not alone in this, it will get better.
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Post by jmontan27 on Jan 31, 2007 21:00:37 GMT
Thanks sianyc
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Post by jmontan27 on Jan 31, 2007 21:14:34 GMT
Another day like all the others. My other half had the day off work to attend a meeting in London, but in the end he didn't go because I was too scared to stay in the house by myself. Felt really guilty because he is so patient and understanding, yet this is ruining his life too. He tried to cheer me up by taking me (and baby) out for lunch, but as soon as I got out the car, I felt a bad pain radiating throughout my whole leg, which I took to mean that my neurological illness is taking more of a hold. The pain lasted over an hour and I was so anxious I couldn't eat anything, so I spoiled that as well.
OH phoned the hv this morning as she still doesn't know I'm feeling like this. However, she wasn't around so he left a message. My GP was going to inform her that he thought I had PND, but I haven't heard anything. This evening OH had a GP appointment himself and mentioned the hv thing, and apparently the GP has left messages, but she still hasn't contacted me.
Still can't stop myself checking google for my symptoms. Even though I know them all off by heart now, I still feel compelled to keep searching, though I don't know why. As far as I'm concerned I have a terminal illness and that's it. What I'd give to be free of these thoughts.
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Post by cheshire on Feb 3, 2007 20:23:10 GMT
Hi Jmontan27,
Hope you don't mind me interrupting your diary?
I was like you around searching the Internet for symptoms etc. And I would say that if you're concerned, keep pressing your GP. I did. I may have annoyed them at times, but actually (all female practice), they were very understanding. I once insisted on being checked for 'heart failure' , as I made the mistake of consulting the Internet - only to find my pulse was abnormally high. But always worth checking I think, if you are concerned.
How you feeling now?
Thinking of you, Hopefulx
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Post by helenr on Feb 3, 2007 20:49:51 GMT
Hi,
I really get so angry by the lack of urgency and importance that some people place on this illness. (read blood boiling thread)
If you feel strong enough please, please keep pushing gp or hv for help. If you dont think you can, your husband might. Its only through their help that i can keep my fears about terminal illness in check (for most of the day anyway).
Love and hugs Helenr x.
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Post by jmontan27 on Feb 3, 2007 20:59:34 GMT
Hi Helen and Hopeful
Thanks for your messages. I am still having these stupid symptoms, coupled with strange tingling and numbness, which I've read that others on the forum have also suffered from.
I understand my hv only works 2 days a week which is why she is so hard to get hold of, but all the same I still feel that even if she couldn't contact me, she could have asked one of her colleagues to. I really feel at a dead end with my GP. He is sure I haven't got a physical illness and he doesn't really know where to go from here as I can't take anti depressants due to breastfeeding.
Helen - how do you keep your terminal illness fears in check? I would be glad of any tips!
Thanks
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Post by helenr on Feb 3, 2007 21:19:54 GMT
My GP and MW encouraged me to start prozac, even though i was breast feeding. All the research states that you should take it just after a feed when you are going to have the longest break. Its approx 0.0001% will come through in breast milk, which they felt was negligible as i was so ill. Unfortunately prozac wasn't enough for me and i had to start venlaflaxine, which meant i had to stop breast feeding. I was sat down and told to pick the lesser of two evils, start formula and hopefully become better, or keep feeding and stay very unwell. I chose the latter. Dont get me wrong its not all rose, the nights are still the worst when its all quiet, but at least i get releif during the day. Im not sure about st johns wort and breast feeding, or there may be another herbal remedy. Im sorry i dont have a magic answer (otherwise i'd give up nursing and make my fortune). Love and hugs Helenr X
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Post by jmontan27 on Feb 5, 2007 19:00:22 GMT
Had both my kids at home today (1yr old and 4 yr old). My oldest usually spends 3 full days a week at nursery, but Mondays and Fridays I have both of them. Normally this prospect freaks me out (don't know why - they're my kids after all) and I dread my husband going to work. Still, today wasn't too bad. Spent 4 hrs out the house at the soft play area and gave them their dinner there. Mealtimes are another thing that cause me anxiety. My 4 year old eats anything, but still wants me to feed him (even though he uses a knife and fork perfectly at nursery, he point-blank refuses to feed himself lunch at home). My youngest didn't really eat anything until he was 10 months old and is still fussy. He is still waking 2-3 times a night to be breast-fed. I don't know how I'm going to break this habit as he cries and cries if I don't feed him. I'm so tired. I long for a full night's sleep.
Anyway, saw a couple of friends and their children while I was out. I'm still able to hold a light-hearted conversation and they haven't got a clue that I'm in a constant state of panic. Wierd really.
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Post by jmontan27 on Feb 7, 2007 21:44:02 GMT
Still no word from the hv. It has been 3 weeks now that we (including GP) have been leaving messages for her. I am quite cross to be honest. I mean, what if I had been suicidal or something? I just feel like I've been diagnosed and then left to get on with it - no help or support from the medical profession. Thank God for a supportive husband and the kind people on this forum. When I first mentioned how I felt to friends they were concerned for the first week but now it seems like yesterday's news and I think they think it was just a transient thing that I would suddenly get better from. I don't know, I feel cynical for saying this but sometimes I feel people spout empty platitudes then it's on to the next "cause".
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Post by Veritee on Feb 8, 2007 10:57:31 GMT
Dear Jmontan
I hope you do not mind me commenting on your dairy - but I felt I had to say that it simply is not good enough to hear nothing back from your HV for over three weeks, when you have contacted her and asked to speak to her urgently and when you have PNI.
It does not matter what your individual HV hours are - you are within your rights for you or your OH to contact the manager of your HV team and complain and ask for an urgent appointment.
Do not leave a message as the 'team manager ' to phone you or your OH back if you do not speak to the Team Leader when you call.
You could also ask for your HV to be changed. I did this as mine was not very helpful and consequently I got a really good HV who's support was really effective after months of a dire response from the other one.
Personal opinions should not come into your professional life but it is a fact that some HV just do not have any interest in PNI or even feel it exists beyond a need for you to 'pull your socks up' !
I have no idea if this is why your HV is not treating your contact as a matter of urgency but as she has not responded in reasonable time - waiting 3 weeks is very unreasonable whatever her personal or professional situation as if she is unable to see you or ill, someone else shouold have been alocated her work - you also have a right to request another HV as she obviously does not suit your needs for whatever reason!
You could also go back to your GP and say 'I have been diagnosed but what next?'
Tell him the anticipated extra support form your HV has not materialized and that you are unhappy that she has not even got back to you. And also ask if their is any other support or treatment that can be put in pace such as counseling or attending a group or even a CPN form th mental health team/
Go to the GP with your Oh if you think that will help - if you do these things it will get the ball rolling and do not worry about offending anyone as if you request a new HV you need not ever see the old one again.
I am yet again appalled by the lack of care women with PNI receive
let us know what happens?
Veritee XX
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Post by jmontan27 on Feb 9, 2007 20:58:51 GMT
Thank you Veritee.
To be honest, I've had it up to here with the medical profession (even though I work in it!). I was talking to a friend (diagnosed with PNI a year ago and doing really well now) about the hv issue, and I think the reason why she (hv) hasn't contacted me is because last summer (when my son was 4 months old) they thought I had PNI and were quite helpful, coming round to visit every week and offering to refer me to community mental health. The thing is, I didn't have PNI then. What they read as "depression" was me just being p*ssed off because I was in pain all the time following child birth injuries. I felt nothing like I do now mentally - still slept well at night, not particularly anxious etc. Didn't feel at all depressed. So I said I was fine (which I was). So, here we are 8 months later and now I really am suffering with this thing and maybe they don't want to get involved because they think there's no point. I feel like I've burnt my bridges really.
To top it all off , yesterday I had a phone call from a community mental health social worker to say did I realise my GP had referred me there? He told me he was just referring me for cognitive therapy, but she said I had to be assessed to see if this was the treatment that would be most beneficial. Well, to be honest, I don't want to see someone whose going to try and relate everything to my childhood. I just want cognitive therapy to help me with this health anxiety thing. I'm now thinking I'm just going to forget I ever mentioned this to my GP and try and get over it myself. The mental health sw said I had a week to think about it and if she hadn't heard anything from me, she'd assume I didn't want their services. So I will have burnt my bridges there as well.
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Post by helenr on Feb 10, 2007 21:43:39 GMT
Oh i am so p***ed off for you. Can you and your husband go and see one of the partner gps? The lack of care your not receiving is dreadful! Its hard enough to admit you have this illness as it is. I know what you mean about being yesterdays news, it really is true that no one understands unless theyve been through it.
Why not contact mhsw on mon, you have nothing to lose and they might even be more help than you think. i have one and although i didnt want anything to do with her at the beginning, i now look forward to seeing her. i suppose i know that nothing i say will shock her.
love and hugs x.
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Post by jmontan27 on Feb 11, 2007 19:59:35 GMT
Thanks Helen
Think I may ring the MHSW - it's just the term "social worker" that freaks me out. I suppose there's no obligation for me to accept a particular treatment that I don't think will be beneficial. It's just the thought of "being in the system" the frightens me.
I had four days this week where I was feeling much better - almost normal. I stopped looking things up on health websites and my physical symptoms calmed down to the extent that even when they were still there, I convinced myself that I didn't have a serious physical disease. However, on Friday night they started recurring again (don't know whether this had anything to do with an argument I had with my dad that night) and the old feelings of being scared to go to bed crept back again. Also twitching started up in muscles all over my body which has fuelled the fear of serious disease again. My OH let me have a couple of hrs in bed this afternoon but I didn't really sleep as I was too worried.
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Post by helenr on Feb 11, 2007 21:46:47 GMT
I know how scary the whole sw thing is, i remember thinking that once i let them in they would run things and maybe even take the kids of me. Honestly, they have been very good, not at all pushy. See wnat they an offer you, you have nothing to lose.
Thinking about you, i too am having a really bad day, but we'll get through it!!!!!!
Love and hugs x.
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