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Post by susie on Jun 4, 2005 4:50:45 GMT
Hi Fran,
I am so sorry that I havent been around for you lately, I have had so much going on that I have hardly been on here at all, I am sorry that you felt you had to go through this on your own, please keep talking, I am sending you a giant hug, take care honey and I will catch up with you soon,
Sus x
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Post by Veritee on Jun 4, 2005 8:40:17 GMT
Hi for today Fran
I am glad you do not mind me asking questions - sometimes I don't know whether people find it too hard to talk about - but I suppose they either would not answer or would say so?
I too am sorry you felt you had to go through this alone - or rather without this forum as it does sound to me that you have a loving family and good friends.
I can understand not being able to believe that an emotional/mental illness can make you feel so crap physically - I found it hard too - and in my case, as you know, having had a food intolerance mis- diagnosed as a mental issue as a child I was even more wary than most of accepting it.
However having worked with distressed people and known many friends going through very stressful times or mental illness, I did accept that being so stressed mentally and emotionally could both make any actual physical complaints worse or harder to bear but also lower your immune system and in addition a high level of stress can cause many physical symptoms in its self ranging from digestive disturbances. headaches in fact all the things you describe 'head spinning headaches , aches , joint pains , nausea ' plus others such as chest pains, breathing problems, dizziness - the list goes on
Some like shortness of breath, chest pain choking sensations, dizziness, hot and cold flushes, trembling, palpitations, numbness or tingling sensations, are very common symptoms of 'panic disorder' or panic attacks (I took this from a great USA book called 'Beyond the Blues' it is very short but lists usefully various symptoms and the so coincide with all the symptoms reported on here)
Anyway I had to be convinced by checking everything out with the GP too.
I found in fact that a couple of problems were caused by a physical complaint which is why it is important not to assume that everything is PNI and get it checked out i.e. sinusitis that I never had till the birth but I had to have an op for it when she was 3 and it has never returned and arthritis in both knees and I do suffer from hormone induced migraines which have gone now I have had my menopause.
But all the other weird and horrible symptoms were PNI as I believe yours are - and I would understand the 'lump' thing I was convinced at one point I had many.
Anyway what I am saying is you are doing the right thing by getting it checked out - but you have been given the all clear on all things and their comes a point when you have to believe that your symptoms are not caused by any underling physical illness
and once you do you can then concentrate on getting better from PNI - conquering this thing.
It is a positive that you do not actually want to believe that you are ill and it is not PNI - I have come across many women that would rather it be an illness than PNI as they see the stigma of PNI as too great and also feel that an illness is treatable while when you are at your worse with PNI it feels like PNI is not.
If is also easier for our loved ones to understand an illness and give you the help and support you need.
But as you know PNI is and illness too.
I know that at the moment you really feel you will not get better - but you will.
I quote again from this book I am reading ( I just got it from USA after waiting about 6 months it finally came and it is a really useful book - worth the wait!)
'It says 'we have never met a woman who, after proper treatment did not recover'
I would personally go further than this - ie even without treatment all women recover -
I am sure that getting 'proper' treatment will leave less after affects from having had it and it might last for less time - but I am pretty certain all women get better in time.
But you are getting good treatment - and in a couple of months time you will have more treatment and therapy specifically designed to help you.
I find you are amazing in this enduring love of your family you have and wanted to spend every minute with them.
I was not like that - some days I wanted them to go to hell and just leave me alone and I often felt no love at all for either Caja or Barry or my sister and brother who I am close to - and I pretty much hated my friends.
And to take on another teenager who is struggling with exams when you are feeling like this is nothing short of saintly to me!
As you know my daughter is doing her GCSEs next week and I find this really difficult, dreading it really, and would no more take on someone else’s child doing their exams than fly to the moon at this point.
( I have wanted to ask how Amy is doing in her GCSE exams but was worried incase it was upsetting you as it is me? - but please let me know and I will let you know how Caja is doing!)
You are a remarkable woman and while I know this wont help you and you may not even hear it - but I wanted to say it. All the best
Veritee
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Post by francoise on Jun 7, 2005 17:22:07 GMT
hi vee and thanks susie aswell ,
i watched that programme but am i alone in not relating to it much vee, it just seemed so mild to waht i have felt , i wanted to relate so badly but couldnt , my hubby said it didnt sound like me atall and i sounded more like i had a breakdown than that , i dunno though , im feeling a little better , daz cut my hair today and died it , everyone thought i had been hairdressers but it was just a sttaight cut along the back , really short , to be honest i wouldnt of minded if he had mede it bald though
my mate has rang to say she wants to come back up in jily , thats so cool eh shes so lovely , im missing company so much now , amy is doing well with her exams , well she thinks so although she found maths quite hard , she doesnt seem to stressed out though luckily
i dont know what to say today realy , im tired and plodding along , not desperate though like i was last week but not much different in a way either , its just hard vee to stay focused , it seems to take up so much energy and doesnt last very long really , imstill reading all the posts though when i can get on , leon is keeping me busy and our extra guest in the house , im not remarkable vee but thanks for saying that , i fail in most of my things i undertake , im jusat hoping i beat this horrid thing but im believing you when you say i will now so that is a massive step forward isnt it . thankyou again vee for the past nearly ten months of this i have had your support and friendship , thanks for sticking it out with me
love fran xxxxx
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Post by wendabell on Jun 8, 2005 2:10:23 GMT
your doing ok fran, you have come such a long way since last year. there is no set time limit for recovery it takes everyone different legnths of time but we will and do get there. also hunny the program only showed a few women and then those who felt they could proberbly open up on tv.I dont know about you but i couldnt tell people my darkest thoughts especially on tv. So try not to feel to bad.At least they are putting programs on about this now. But you will get better and as long as you keep talking it will be ok. We are all still around if you need a chat. love and hugs wendy x.x.x
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Post by francoise on Jun 8, 2005 5:33:53 GMT
hi my pms made me very chuffed this morning and stuff in the mods area , i was really touched by them so much had a wierd night though , i was walking down the road in my pjs at three this morning coz i could hear noices , i wasnt asleep although half asleep no doubt but i had to see where the noise was coming from , daz said he didnt hear anything and then when i got quite far i couldnt hear it anymore..sounds mad does it , i hope i dont do thisalot as sometimes i dont wear anything to bed so i hope at least i have the sense to put some clothes on first eh ,
wends amy has had my phone but i got it again now hun so i can text again and vee ill phone you next week if thats opk , im hopng things are abit better by then , dont ask me why though as i have no idea , just a feeling ,
fran xxxx
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Post by Veritee on Jun 8, 2005 9:59:47 GMT
Oh Dear Fran
what an awful night?
What is it you thought you heard? was it a bit like semi - sleepwalking or did you really think you had heard something that you needed you to do something about?
Do you live in a very populated street? Was daz up, I suppose he was if her said he did not hear anything.
I live in the middle of nowhere and I have been up to the stables in my night things when I had PNI worrying that the animals were being attacked -
but then there was no one about except my dog and an owl an of course the goats and horses - and it really did not matter.
I hope you are able to get some sleep now to make up for it as being tired does not help PNI
All the best
veritee
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Post by monica on Jun 13, 2005 21:05:48 GMT
Hello Fran and others
I just read the your account above and it's as if it's me talking. The obsession with illness. I, too, still think what do I have? can it just be PNI? Brain tumours, breast cancer, womb cancer, MS, you name it I think I can have it. And like you, I'd feel so much happier if someone could categorically say it's just PNI. If I feel better, physically, I feel better emotionally. It's almost disbelief - how can PNI affect you so much physically? Thinking of you and you're not alone.
Monica
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Post by francoise on Jun 14, 2005 10:26:56 GMT
hi monica
its awful isnt it , im back there again with it all , im not convinced yet , sometimes i think i am and then it comes back so bad that i really find it so hard to believe , im getting numb patches alot right now and i thought i had something quite severe and still do , thanks for posting on here , i hope we soon get some solid reassurance from someone that it is pni , it would certainly help so much eh and then everytime we get something we can put it to the back of our minds abit and think its at least explainable eh
take care hun , please keep writing on here to if you would like , i feel safer on this part of the forum for a reason im not even sure what really
love fran xxxx
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Post by Veritee on Jun 14, 2005 20:25:37 GMT
Hi Fran I was really wondering how you were.
I so wish I could say something that would convince you that at least most your symptoms - even the really physical ones - are caused by PNI and nothing else.
But I just know you will not believe me.
As I have always said it is important to get your symptoms checked out by a doctor and even see a consultant and have tests etc if need be - as it is always important to eliminate physical causes first.
And you may find that some of your symptoms do have a physical caused as being stressed and distressed does lower your immune system and your resistance to pain.
( I found that I did indeed have a sinus infection problem which I had an operation for - one of my symptoms when I had PNI was a crushing pressure feeling in my head and over my eyes which I had never had before and put down to a brain tumor - but it turned out to be a sinus infection and shattered sinus from a broken nose in my youth , but the reason it bothered me only when i had PNi was because PNI had lowered my immune system and my sinuses had become infected)
So what I am saying is they your mind is intertwined with your physical well being and if your mind is not happy it can affect your body.
BUT your mind can not give you a brain tumor - I did not have a brain tumor I had a sinus problem which was treated and never came back.
You should get everything checked out in case like me some physical symptoms have a cause that can be treated.
But once you have had this checked out and no life threatening problem has been found can you not accept it is PNI that is causing your symptoms and go full out to get counseling , therapy whatever you need to get yourself better.
All the best
Veritee
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Post by francoise on Jun 14, 2005 22:00:50 GMT
hi vee
i know what ure saying thanks so much , i just feel so crap , im aching all over and i have been to the docs today for a throat infection and he gave me anti biotics but when that started it started everything else off and i can hardly move without being in so much pain but ive had all the tests they can do they said so im just a miserable cow waiting for grim reaper it feels like and i so dont want to be like this , im such a happy person underneath and love everyone but i feel so down and hopeless now ,
i dunno what to say when im lke this , im past the crying phase and in the giving up one now mostly , i did have two good days sort off earlier in the week but they soon started and this crappy feeling came back so hard and fast ve , im sorry to be like this , i dont moan at anyone im just here plodding along being quiet as usual , dont want to moan on here either but its all i have as i have no visits coz the h v is on holiday so its three weeks now til i see anyone next and my therapy hasnt got started properly yet , anyway thanks vee , daz has been off work this last few days for me as i begged him to and he was fine about staying home with me luckily
love francoise xxxxx
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Post by Veritee on Jun 14, 2005 22:35:34 GMT
Dear Fran
Please moan on here as much as you like - I do know it is so rough when you feel like this - but great of Daz to take time off and understand.
He sounds like a really nice person and like he loves you! It sounds that due to PNI you have got so low your immune system is really suffering now too - I had about a year getting every bug possible to get too.
When you say you are in pain - where - is it ? your back or other joints? or where?
Barry also took time off when it could have cost him his job at the time as he works aways at sea and they do not accept any reason for not going back on time. Good men are worth so much.
Please hang on in there - I know it will get better for you in the end.
You say your therapy has not got started - does this mean you have met a counselor or therapist?
But in the meantime please contact me if it will help. I should be in the rest of the week
All the best
veritee
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Post by monica on Jun 16, 2005 19:12:46 GMT
Hi
I, too, from about October to February seemed to be coming down with everything going. I had recurrent tonsilitis, something I've not had for decades! I still get sore throats, now. I've always been of quite good health, apart from the odd cold, but for at least 3 months I was simply wasted. I also seem to have sore joints. With 2, I'm perpertually knackered
Fran, take it easy if you can (I know it's easy to say!) My doctor suggested I take echinacea to boost the immune system. Apparently, the liquid form is best as it acts quicker.
I hope you're feeling a bit better. I'm sure it's been a real help Daz taking off a few days, so try and get some rest in.
Monica
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Post by francoise on Jun 17, 2005 10:12:15 GMT
hi
thankyou monica and vee
its pretty much joint pains on the top half of my body , elbows , upper n lower back now , hands ribs still , i dont like taking to many pain killers so i try n leave off them now , i was pretty healthy before all this too , its quite sad to feel so different from the inside out
my sister is coming over everyday at the moment to see me , shes doing me a food chart today and daz has sorted the treadmill pout in a better place and everybody is loving my short coloured hair , got blonde running thru it , looks ok i spose ,
i know some of what i did wrong now , i messed with me pills abit like stopping the piull and restarting it alot and the prozac but my hope is at least to get off the prozac this year anyway , not bothered if i stay on the pill , that would be fine i think
im just so tired too all the time , i cant be bothered to do anything else than i have to , im not sleeping anymore , i was much better before im sure but to be honest i cant really remember , i got a letter off the therapist who says im still on the waiting list , might be a while , that noise i heard a few weeks ago i found out what it was , it was the power station at ironbridge , seems really loud sometimes , it was doing it last night and daz said it was that so thats cool ,
amys going to america for a month with my sister after her exams which shes looking forward to so much , sam is going on holiday with his nan and it will be just me n leon n daz for a while , be ok
anyway thanks so much for these replies , im so in need of them right now and so appreciative as always , im sorry to people i havent been in contact with lately but i cant when im crap so well as normal , i know they will understand as we all have been here and some still are ,
love fran xxxx
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Post by wendabell on Jun 17, 2005 20:58:05 GMT
oh fran i wish i could give you a hug girl. maybe this time with just you daz and leon will give you a good rest maybe.Lucky amy eh. so you finally had your hair cut short wish i could see it with the blond running through it. dont give up flower Its bad now i know and you feel like this will go on forever with no end in site and noone can tell you different and recovery seems a million miles away or not at all.But it will come. You are such a strong woman coming this far with so much pain.I admire the things you have done in this illness as i was not a strong person at all couldnt talk didnt accept help and didnt commit myself to medication. i made it worse for me but you have that stregnth i lack and i am so proud of that in you. I hope you do use the time with daz and leon to take things a little easier you do deserve it and its what your body needs too to get better. im thinking of you love wendy x.x.x
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Post by francoise on Jun 17, 2005 21:57:35 GMT
thankyou wendy
u know the feelings so well hun , u described it just as im feeling it , it does seem to drag doesnt it , id like to be locked ion a room right now in a good place with carers u know and taken off the pills until im back to normal , wierd thing to want eh , just what im thinking at the moment though , thankyou so much and u r a strong girl hunny , and a lovely friend
fran xxxx
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