The Ups and the Downs

[Veritee]

Dear all

To all you who are now experiencing swings of ups and downs.

I know that this may seem contradictory but when women say on here that they are starting to feel miserable again after thinking they were on the road to recovery and that now their mood swings from good/feeling 'normal' to feeling they are right back there at the beginning of PNI -

I do not regard this is a sign that you are going back wards - but that you are certainly getting better!


It was my experience and that of so many on here that it can not be a co-incidence - that there is a pattern to recovery from PNI which is similar for many.

It would be nice if at a certain point we just started to feel better and we built upon this until we could no longer say we had PNI.

However unfortunately this does not seem to be the case.

At first PNI is just such un-mitigating misery - day after day week after week, whereby

- depending on the person, the symptoms which cause the most grief are different, and we may have different symptoms -

we all share that feeling that this may go on for ever and there really is never a day we can say is totally a good one

It seems it will never end and there just is no light at the end of the tunnel.

Then we get a few good days or even weeks or just hours - this does not mean we feel well, but compared to the unrelenting misery of before - it is such a good experience to know you can have good days /weeks/hours and the tunnel seems shorter.

we can even suddenly find our mood swings from hour to hour through out a day - one moment feeling on top of the world - the other completely miserable

But even this ironically I think is a sign of recovery or at least the start of recovery! - it is very different from th total immersion in feeling awful 24/7 that most of us get at the start of PNI
so look upon these ups and downs , even when they happen in the same day , as a step forward!!

Then what happens to most is we then after a period of feeling better - get a bad day or two or three, and we crash!!

In my case I experienced despair that the recovery I thought I was gong through was an illusion - I had been fooling myself - and I would never get well!!

However if I thought about it on my bad days I did not feel any worse than before in fact probably better but after experiencing some lifting of the illness and days when I felt 'almost' but not quite 'normal' to go down again felt worse than being always down - it was such a disappointment.

After that - for me at least followed a period of time when I was on a bit of a roller coaster of moods - I could never know how I would wake up the next day, fine or really down.

For m, because I think I did not take medication and started to reach menopause during this time

( periods and other hormonal fluctuations for other reasons really do seem to have a drastic effect on this ie before a period you can feel absolutely down and desperate even suicidal , at least this was my experience- as someone pointed out the pill can do this too)

this period did last a very long time for me, but for others it has been only a couple of months or so.

During this time however the 'normal' days gradually started to supersede the 'bad' days,


This did not mean however that I was walking on air, totally happy on these days, I still had my issues and as I have said before - more issues due to having suffered PNI in the first place - but I more often felt well and 'normal' than ill and 'bad'.

I think it is important to distinguish between being happy and being well.


continued

[Veritee]

continued
***********

I feel it is important to say that recovering from PNI does not automatically mean all the other issues in your life disappear and you are always happy!

If you are lucky and outside having PNI your life is reasonably content with no real stresses you can not handle and no ongoing conflicts or problems you need to overcome or face - then it might mean for you that recovery from PNI means you become mostly happy and content/fulfilled.

However for the most of us it means you no longer feel ill, that you feel 'normal' and you are able to start to deal again with your like and maybe issues your PNI put on hold, in a mostly constructive way and in a way which is 'normal' for you.

As I said as time went on - and for me it took a significant period of time - the ordinary days became more than the ill days and then one day I realised I had not felt like I had PNI for many months.

During these ups and downs there were some new developments in my mood though that I had not had before.


One that is relevant here is that Holidays such as Christmas instead of making me feel more relaxed ( I worked as a youth worker all through PNI) would actually bring on 'bad' days.

Now I think the change of routine, not feeling needed at work and the expectation from me and my family that I would be fine and we would all have a good time.

The other was that for me during this time I experienced what I can only describe as ‘rage’ Usually associated with my periods I would be triggered by a small incident into a ‘rage’ whereby I felt uncontrollable anger maybe even for a few days.

I would be REALY worried at that time that I would do something awful and hurt someone as some of my bad thoughts towards Caja and others came back also.


These rages were really horrible but relatively short lived. They may have been for me associated with menopause as much as PNI as I have heard that menopausal women do suffer this – but also so do women recovering from PNI

My answer was at first HRT but eventually I actually used progesterone cream which menstruating women can use and seemed to work better for me

Many women must have found it helpful as the APNI promote it and have a link on their site as to where you can buy it

ie www.apni.org/Index.htm
'contact Simone Plaut on 020 7794 0709. It cost approx. £35 for 4 months supply.'


So this long explanation is why when women say they are experiencing the ups and downs – I see this as a positive – a sign of getting better from PNI and I think it is useful to hold on to this during the lows


This does not mean you should not discuss and offload how you feel during this period on here or using any other support you may have

– I think this may be more necessary than ever as the ‘downs’ can really throw you in despair – as I said it was during these downs that I felt truly suicidal for the only time with PNI - I think for me these were my 'grim reaper' days .

But conversely it is a sign that you are getting through this illness and try to use any method that helps ie support, counselling, working, activities, progesterone cream, alternative therapy, medication, meditation whatever helps to get you through the down times.


Al the best

Veritee

[Hayley]

Thanks Veritee your post helped alot, im in the stage that i feel better some days and then others i feel like im back to the start with it all. thinking about going back to the doc as im having more bad days than good at the moment but really dont want to go back on the meds hopefully i can get through this with out them.

[wendabell]

hey hailey,
i also have a little girl born on october 03 on the 19th though when was your cherub born.

[Hayley]

she was born on the 5th, love the age shes at now, not sure if thats because i feel abit better than i did 5 months ago or what.

[wendabell]

my friends little girl was born then too.and its my sisters birthday. wow!
yep this age is full of wonderment.I think its proberbly a bit of both,your feeling better so enjoyng her more and at this age she is interacting with the world so much, and has far more personality coming out now.its a beutiful age 1 and it gets beter and better as the months go by watching them grow into a proper little person.
my little one is standing in front of me and she points her finger at me wagging it and babbling as if she is putting the world to rights.its brill
take care flower,
see you soon
love
wendy x.x.x

[cokey]

Thanks Veritee for that.

I had been feeling pretty good prior to Christmas but I think the post-xmas blues hit PNI sufferers harder and events in the news exascerbate these blues.

I am so pleased you took the time to explain how you felt during your recovery as I think a lot of women like me can appreciate your words.

I suspect you nevr hit the down you hit the first time, even though you fear you are crashing. Is that true?

Cokey xxx

[gail]

this post has helped so much.

i think i am going through the ups and the downs. feel good (although not well) then like i did at the start again. feeling like i had kidded myself that i was improving,

how long do these last? im so fed up

gail

[yoyo]

Unfortunately you have to go through this period - it can be weeks or even months but it's a good sign although certainly doesn't feel like it does it?! I foundI'd rather have been down or up - none of the yo yoing around. It does ease & you will learn to ride it out - take each 1/2 day at a time - it helps x

[cheshire]

Hi

As YoYo says -it varies from person to person.
It's a good sign though - it means you're well on the road to recovery

[marion]

Gail - thank you so much for pointing me in the direction of Veritee's posts - this is exactly how I am feeling and has made me cry with relief that it's not just me! As you know I have been so suicidal I have been on the edge of being hospitalised agian this week and it seems that I am the only person this keeps happening too. I feel so alone. Each month I get days where I honestly feel I cant carry on - this month has been particularly bad where I have really scared myself - thinking that if I'd done what I was so close to doing on monday morning I wold not be here now is a terrifying thoguht. I am finding myself increasinlgy out of control on these days and although I do reach out for help it is a very lonely place.

Reading that other people have become more down than they remember being at the start of the illness when they thoguht they were getting better really does fill me with a bit of hope that I am infact getting better whereas right now I have been feelimg like I am getting worse. When I fist started getting unwell back in Nov/Dev I didnt get suicidal thoguhts - I wasnt down and I didnt self harm like I do now but as the months are going on in these areas I am getting wrose. The self harm is getting worse - I have scars all over my arms which I am so ashamed of but I cant help doing things to myself. My CPN thinks I have a thought disorder and am on a new drug which is used to treat schizophrenics which terrifies me but maybe this will help me control my anxieties and the dreadful thoughts a bit more.

My bad days are SO bad but I guess that's in comparison to my good das - these arent the best - I awlays get anxiety every day and I'm having great problems going outside - I like it here with Chloe in our little 4 walled bubble - I feel safe here and I dont like putting myself under undue stress by going outside - I dont like to ruin what for me is a good day - I dont get many and I like to enjoy them!

Anyway - ramble over - thanks again Gail - this link has really helped. Maybe I am getting there after all?? I must remmebr back in Dec/Feb when every day was a bad day.

Love
Marion.

[jemima]

Once again Ihave found the advice and support I need.This site is fantastic and most definitely a huge help in my recovery.Thankyou Verity and everyone.
Woke up to a bad day today,I really thought that I would just take the ADs and would be instantly ok! I knew I would have to do some sort of therapy as well but didnt realise that as much of a process it is to realise the onset of the illness, it is just as much of one to recover! Feel definitely on road to recovery, love to everyone , Jemima x

[cheshire]

Hi Jemima,

Glad you feel you're making progress - it's not straightforward is it ? - onset or recovery - but I found that acknowledging this helped too.

Keep in touch x

[jemima]

Hi Hopeful, no its not!But do you know what?In some ways it has given me great strength and insight into my whole life so far!And there was me thinking I had had a tough time so far, this is the hardest thing I have ever had to deal with mentally and I consider myself a fairly strong person.The worst of it is the isolation and not being able to share it with the closest to you.Thank god for this site and the internet! My mum had it in the sixties and went onto become an alcoholic, Ive never understood it before as she never really talked about either but I do now!Wish she was still here so I could tell her.

[winegirl]

Hi Jemima

Yes, I cant imagine how much harder it must have been 40-50 years ago. It was far more of a taboo subject back then too and women just had to suffer in silence. In some respects we are very lucky to have the tools, support and acknowledgement that we have nowadays, all be it still a way to go!

Take Care

WG xx