Sorry it's just.......: I am truly... - Fibromyalgia Acti...

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Sorry it's just.......

Debsdelight72 profile image
9 Replies

I am truly sorry I have been asked by my mental health lady, (cant spell the phyco thing) to write down why I think my Mental health issues keep poking through my wonder woman cape.

(deep sigh) Well for starters she thinks I need to find a hobby?????

I've already told her, Adult colouring (Johanna Basford) I buy 4 of the same book 4 times when they come out 1. To colour, 2. a spare untouched and looking fab on my desk surrounded by my beautiful pencil crayons,3, Just in case I make a hash of no;1, Just because,

Knitting, My Nana tried to teach me when I was approx 6 yrs old, But I just seemed to get things twisted up and with a lot of holes in it.So my neighbour and I were chatting over the back wall in the garden, We got to start talking about our different things we would like to learn as we have too much time doing nothing, She showed me how to cast on and off, Suddenly I just started knitting away, I like to think my Nana was watching and she can see I learnt more than we both thought, I Knit baby animals and find it soothing,

Only trouble is my OCD kicks in and writing out the patterns can be tricky, I take anything up to approx 30 times just to do the title, ( I like it to be my best writing) Then knitting takes just as many times because it looks to me shoddy workmanship, (workwomanship) Even when Hubby says it's great, I'm doing all this because I'm working up to leaving the house to maybe taking my wares to a car boot sale or craft sale (I really don't think they are or will be good enough for that but we'll see)

Making albums,could be photo albums or scrap books, So many beautiful papers available and the tutorials on line makes them look easy,

Learning to write cursive, just like writing in the days of old, Lots of loops and curves, A relaxing but worthwhile hobby, ( I wish the good old pen and paper would come back) The youths of today,can't write like before,because they are not taught to do so,But marvels to type)

I want to get to grips with my sewing machine, I have bunny,mice and teddy patterns to try, but I don't even know how to thread the needle yet.(I'll get there)

Crochet, I have been learning on line and have some really nice kits,(animals again) It's different than crocheting clothing etc, It's called Amiugurima (sorry cant spell again),

I use to do a lot of gardening before I got sick,I dug out a huge pond for the wildlife and also had Kio carp in another pond, Lots of beautiful flowers, The scent of my garden was heaven, What I'd do to have that back,and the bungalow, (I digress)

Quilling, I didn't know what beautiful shapes and colours you can achieve, ( I make..... Yes you guest it, animals)

I'm not sure if this is a hobby or not but I have 3 newborn baby dolls now and a vast amount of clothing (premature baby clothes from e-bay) They all sit or lay down in a moses basket, They look so real and not once have they cried, vomited or pooped on me, They are weighted and fully pliable,They have also slept through the night since they arrived, Which is more then be said about me.

I am known to read lot of books, Crime thriller,fantasy,horror and romantic comedy, Iv'e also got the same book in a dvd so if the Fibro gets in the way, I can try to follow on screen or just listen,I think I'll have to think about audio sooner than I wanted, My reaction to light and noise seemed to be getting the best of me,

Will that do? Phsyco lady, (wow I've forgotten your name, Sorry)

I know the shifty stuff is next on-line, I really hope I'm not doing this all the time, It's giving me a headache, Why they want to hear all the crap of my life? Bringing it all up time and time again will not make my life any better

Sorry to my Fibro peeps I don't know where I'm surposed to do all this since I'm not on any social media

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Debsdelight72 profile image
Debsdelight72
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9 Replies
Blearyeyed profile image
Blearyeyed

Well , you certainly don't need a hobby do you!😆😆😆Have you been giving the opportunity to go for some Cognitive Behavioural Therapy to help you cope with the OCD ?

Or , possibly an NHS Pacing for Chronic Pain or Chronic Fatigue course would be useful.

They last 8-12 weeks depending on the area you are in and are worth getting in the waiting list for.

It's group workshops combining advice , talking , testing out some physical therapy and CBT to do at home.

You see a Consultant, Psychotherapist and Physiotherapist at each session .

They also try to help you to be honest with yourself about how your condition affects things and accept that you don't need to carry on regardless , or hide your pain under your super hero costume but listen to your body and balance your day instead. One of the hardest lessons to learn but it pays rewards in the end.

Sounds like your current therapist could come up with some better suggestions anyway.

Keep posting here , it's a perfect place to let it all out , hugs , Bee

Debsdelight72 profile image
Debsdelight72 in reply toBlearyeyed

Thanks Blearyeyed, I see a clinical Psycotherapist? once every 6 weeks, It was every Tues and thurs before but it just exhausts me, I hope it's even cut back more soon, I've had some on line stuff with her a few times and phones as well,

I had CBT a few years back,It did not help! I'd just sit there and nod a few times,She just wanted me to touch my face for calming massage? And would talk all squeaky voiced she started to be a pain in the butt (my opinion I'm sure she was very good at her job)

I've had some sort of therapy for a long time on and off for a couple of decades and I end up more upset or angry then I went in,

Blearyeyed profile image
Blearyeyed in reply toDebsdelight72

I know what you mean.And your squeaky voiced advisor doesn't sound much good either.

I don't find the less practical therapies very helpful, especially if the person seeing me seems to know less about the condition I have than my children do , and they gave the appearance of not really having any experience of dealing with a major problem in their lives , or sound like they are just reading out their wisdom from an NHS booklet.

The NHS courses I finally did taught a lot more about breathing techniques , distraction tactics , planning and pacing , ways to spot when you began negative behaviour and ways to walk yourself back from them in a way that suits you.

I think much like physio getting on the right thing can be quite hit and miss and you might need to try a few different options with different people to find a worthwhile one.

The Pacing for Chronic Pain is worth exploring because it's done by three different disciplines and there are individual and group sessions it works far more on pushing forward practical techniques and helping you get on your feet again rather than concentrating on hours of self analysis.

A lot of people find the Distraction therapy of Eye Movement Desensitisation and Reprocessing ( EMDR) is very successful for trauma and OCD and there are free courses on the NHS in most areas for that too , if it's something you fancy and haven't tried yet.

Personally , I'd look up if there is a local sewing club and craft or knitting group for you to join. It's really the best way to get to grips with the equipment and you can enjoy socialising with some great people. I used to run various classes in nature art, photography and textiles as well as enjoy attending other people's classes in a cooperative craft centre that I helped set up with friends. Probably the best therapy you could have.

If you don't fancy a group you can always go to a good fabric shop with your sewing machine for some advice on how to get started,

If you have lots of things you enjoy it's good to make a weekly or daily plan and try small projects first that don't need much planning or hours if time to complete.

Try sewing little toys , or hand or machine sewing "inchies". These are literally just patches of material one or two inches in size which you sew and embellish in whatever creative way you want each day , using colours and fabrics to layer up to fit your mood. You can make these into art works inside frames or sew them to clothes or put them in journals.

Like knitting or crocheting a square a day ( with new stitches , different colours or a motif to increase your skills) then use those squares when you have enough to make a nice happiness blanket or a smaller bag or clothing item.

You can journal in short bursts , just write or draw in it when you have a feeling or something you want to say , positive not just negative, stick in items like ticket stubs , flyers etc with meaning , and you can take photos and print them off to stick in too. Try using different pens , styles and even directions of what you put in so that you don't get caught up in needing to make it appear too orderly . The art of journalling is that it is unique , it becomes perfect in its imperfection and individual style.

The fun of small things is that you don't get overwhelmed by big projects , and because you only do a little thing at a time you don't get tired or make yourself more painful but you can have the satisfaction of also knowing that you've completed something.

Good luck with it all, hugs , Bee

Debsdelight72 profile image
Debsdelight72 in reply toBlearyeyed

Wow, lots of info Thank you, At the moment I have social anxiety as well as everything else going on, It sucks, Hubby and I worked out that I have not socialised for almost 9 years,my only contact on computer as other anxieties on the phone I almost freeze and can't talk, I feel so pathetic sometimes,

I am trying my best, I was to meet phyco lady at my local super market a couple of times, So I used my scooter, Got to the bottom of my road and had to go home, By the time I got there, I was in a full on panic attack and couldn't breathe ( I was breathing, other wise I wouldn't be here) haha,

Blearyeyed profile image
Blearyeyed in reply toDebsdelight72

Social Anxiety is a hard one to battle but you will get there.The supermarket trip was just too far in one go , it can take much smaller steps than that.

The fact that you got out onto your scooter to the bottom of the road is still an effort you should feel proud of , you tried and got quite far on your first trips.

It's probably better trying these things with your hubby or another friend for emotional support at first. Go as far as you feel able , not necessarily to a public place with lots of people and when you feel it's time to head home go back.

You will slowly go further and further and get more confident.

If your hubby has a car sometimes it helps to go out to nice quiet places for a drive , take your scooter for a little roll around then go back to the car for a coffee or a picnic when you have managed enough time in the outside air.

Getting out like this to natural spaces like Parks , nature spaces etc can be very healing and boost your positivity being outdoors.

You don't need to interact with people at first just interact with the Natural World.

I often sit in the car when I'm not very mobile and sketch , paint , write about what I see and feel and take photographs, it helps build up your social strength because you get to feel comfortable in new outdoor spaces first before trying to say hello to a passer by or going to a shop or cafe.

Maybe you could find some local groups or people that run clubs that also do online pages or will interact with you online first so you get to know them and feel confident about them before you try out meeting up at a face to face group. I'm sure the nice people at many hobby groups would be happy to do that to help you get started.

Take care , hugs , Bee

Gigiruth profile image
Gigiruth in reply toDebsdelight72

Hi Debsdelight72I know it's hard but please be kind to yourself when you can. You are not pathetic in any way,the freeze response is a real thing and hard wired into humans as a survival response.

You are not choosing to freeze it just happens.

I hope you find ways ro reset.

I use Deb Dana 58 card deck polyvagal to understand.

Take care

Gigi

Bobthedog6 profile image
Bobthedog6

Hi there. Sounds like you might like to have a few friends to have a chat to as well. Am here for you if you fancy that. Do not think I have this debilitating disease nearly as badly as you but I do have it an it flares up when I get stressed or, recently, if I have a mishap - like damaging my leg in a pothole. Enough of that though. I have found (even though it can sometimes be painful) that exercise really does help - not overnight - but it does, eventually, help this condition. I have just renewed my membership of the gym and am starting with 'baby steps' to try and get fit again. My muscles are complaining like mad but am trying to ignore them and get on with it. Wishing you all the luck going. xx

Yassytina profile image
YassytinaFMA UK Volunteer

Hi there, yes there are lots of things we can try and do in the way of hobbies for sure 😀and it’s picking the days we actually feel like doing them, I do love the garden (cannot do so much now &differently not outside till it warms up )I like growing seeds in my conservatory when it warms (it turns into a greenhouse much too the dismay of my husband 🤣) I even watch my football team on Sky TV as Ipswich town are doing very well in the Championship😃being chased by other teams but a good shout at the screen when the officials get it wrong does me the power of good. 😉Trying too keep postive and our Wonder Women Batman caps on is not always easy , it’s good too chat here , it does help so much x

Cotswolds25121 profile image
Cotswolds25121

Hi Deb, wow, you really give everything a good shot 🙌😁I totally understand and agree with your point about when in therapy( I’ve had many experiences of different types over many years. I won’t go into some types I’ve had but where cbt is concerned I didn’t personally find it helpful the only thing I still use is when I’m having anxiety I do use the recommended thinking white polar bear which stops my mind thinking about anything else after a couple of minutes doing it and that I will say helps me to calm myself. Il try not to go on to long winded as I tend to drift but over 20 years ago I experienced something that left me with ptsd. I wasn’t diagnosed for years until a few years ago I had counselling. I was advised that I would put it all in a box, close the lid and somehow miraculously be able to then deal with it 🤦‍♀️🤦‍♀️NOT for me! It’s something that will never leave me no matter how much I want, wish, prayer it would. I recently saw a dr I had never seen and he just stopped all my meds and said he was going to refer me back to mental health and left me in an awful state. It has been a good few months since and I have only just got my meds reinstated. I don’t want to keep having to go back and drag up all the horrific pain and suffering from that awful time again and again! It doesn’t/hasn’t helped and having to go through it all yet again is an horrific feeling for me. He didn’t even remember to refer me either as I found out weeks later from another gp and what kind of gp take’s people cold turkey off their much needed meds when they haven’t even done a referral yet😡it’s absolutely mind boggling. Counselling/therapy may help some but definitely not all so I wish it wouldn’t be classed as the one fits all solution and drs should know better than to just decide to think they are always right!

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