Where has my positivity gone?

Starburst

Afternoon everyone,

I'm sorry for not posting much over the last few weeks, I've been having a difficult time. I tripped and went head/face first into a wall, got concussion and smashed my nose bones to pieces. I had an operation to re-set the bones but it didn't make a huge amount of difference and I'll be needing another one to fully reconstruct the nose, inside and out. So, I've been in pain and feeling quite poorly. I had to stay at home with no visitors to avoid infection and the negative feelings have been festering. I have a history of depression and although I'm no longer clinically depressed, I still find it hard to keep going.

My body is very weak, tired and prone to injury. Just after New Year, I took a tumble and tore a liagment in my ankle and it's still not great. Two days after my operation, I was still woozy and slipped down the stairs mildly tearing something in my shoulder. I keep falling over and injuring myself and my family are quite concerned, as is my physiotherapist. Everytime I injure myself, it knocks my confidence so badly. I'm now extremely nervous doing things like getting out the bath and going places alone. Don't even get me started on trying to get off a train on a rush hour!

Everything feels a real challenge and it's usually when I'm feeling at my lowest that I get hit with an RA flare up. I know I need to stop and rest but I missed precious study time after my operation and I'm lagging behind. I'm so close to the end of my first year and don't want to fall at the last hurdle. People tell me I'll get better and to see my rheumy (which I am anyway in a couple of weeks) but she doesn't have a magic wand. There is no cure, only managment. I feel like most of my family and friends don't understand that.

I feel quite anxious about posting this but I can't tell anyone in real life. I feel the need to keep the smile plastered on my face. I'm not good at letting people know I'm struggling. People tell me I cope so well but if only they knew the truth. So now, you all know the truth. I can cope but right now, I'm struggling a lot. My body isn't feeling strong and my mind is a little hit and miss too.

Thank you for reading my words. I appreciate it so very much.
Sophie

dillydream

Hi Sophie,
I am so sorry to read about the struggles you are having and although i haven`t any words of wisdom, i couldn`t just ignore your post.
There are so many of us on here with differing types of Arthritis and i`m sure someone will be along shortly to give some really useful advice.
Keep going Sophie, things WILL get better although it doesn`t seem very promising at the moment.
The depression will lift eventually ( i`ve been there )and you will feel more able to cope with the Arthritis.
My best wishes,
Dilly x

frogmorton

Oh Sophie!

You poor thing!!

You have such a lot to contend with haven't you?? l know you probably dont want to think about it but have you considered/do you use any mobility aids at all to make you feel less unstable??

You have to do your very best to rest and look after you....you have nearly finished the end of your first year and that is a major achievement when you have RA. You should be so proud of yourself.

Do you know any other people who ahve this sort of thing in the real world Sophie? If not maybe it would be good to think about joining your local A/C group and see if there is anyone there you can relate to?? Then you wouldn't always have to put a brave face on things :?

You are so very wise too to be aware of the fragility of our mental-health when contending with this sort of long term condition. If you are in any doubt at all maybe you should talk to someone about it?? Lots of us on here have had and are taking antidepressants and it really can help...as can talking...don't forget there is the A/C helpline you can ring...l have and bawled me eyes out!!

Love and hugs and hope

Toni xxx

valval

i fell a bit like that but got my arm up and have dammaged my neck instead of knocking my self out not sure which is worse. i know the feelings you are talking about and the fake smile that does not reach your eyes you did the right thing shareing with us we understand and feel for you we will suport you all we can you are not alone and it is scary managing with this i have been so tempted to use a stick to make things safer but well you know how it is val

Colin1

Hi Sophie
My god you dont do things by half, Poor you im not suprized its knocked the stuffing out of you. Take care and i hope your feeling better soon
Colin

suncatcher

I am sorry to hear about the accidents. I am not surprised it has shook you up and knocked your confidence. I bottle things up also the stress with that does not help. I am pleased you have mentioned this to us as this is a big step in itself. You have been through a lot. rest up and allow your self time to heal up sending you my best wishes. Your confidence will return i am sure of it. from Joanne

stickywicket

Starburst, please don't apologise for not being around. I've not been around either, simply because I've been having a good time. Which of us should apologise? Neither. You have had a hell of a lot to contend with. I've been living a little. It's all OK.

I can understand your fears of falling again. Just one small part of us, knocked out of kilter, affects all the others. A few weeks ago I had tendonitis in my hip. When I was finally able to stand, then hobble on it the effort of remembering, every step, that I had to lift the leg up further than seemed necessary - or possible - was huge. You, on the other hand, have hurt so many different bits that your difficulties in doing the simplest tasks must be very great, and the dangers of forgetting that must be very mentally exhausting. And then there's the worry over your uni work.

I think you've hit the nail on the head when you say 'there's no cure, only management'. Plan your days (but be flexible if pain etc intervenes). Do what you can reasonably do, Starburst, and forget about the rest. (I know that's easier said than done but few things are as debilitating as worry.) Use walking aids if they help. Use friends if they can help - on & off trains etc? I used to when I was at school. Make sure the uni is fully aware of all you've told us.

Above all, remember you're with us here, so drop that brave smile. That's one effort you don't need to make. You have done incredibly well in your first academic year. Of course you're struggling but you are strong mentally and that strength will get you through this and much more.

Keep talking to us. Your positivity has gone nowhere. It's just having a much needed rest.

tjt6768

Hi Sophie.. Bloomin eck lass.. That's awful.. Don't ever forget that us lot are here, plus there is always the helpline. I've heard wonderful things about them..
I've been rather down myself lately and it's no picnic... You should at least make your GP and Rheumy aware if hows things are? I totally understand the not telling family/friends everything.. I feel that they must be fed up of me moaning about being I'm pain etc..
Keep on posting, take things steady and look after yourself.

Best wishes from me & Ra aka the Great White Dope

julie47

aw dear sophie

I am sorry to read your post, you have been in the wars.

I hope that you start to feel better soon

Love & Hugs ((((((()))))))
juliepf x

suzygirl

Sophie, no one can be positive all the time. Its ok to say this hurts, I miss doing this or that. We all grieve for things we have lost thanks to arfur.

However, you have had everything the last few weeks, pollyanna herself would be down with all you have had!!!!! It is a struggle and people don't always understand. Maybe you could google the spoon theory and show friends and family, maybe that would help them?

Your falling is a worry, do you use mobility aids? You can get flowery sticks, patterened crutches or you can jazz them up yourself. I am trying to do mine.

Speak to uni or college and explain your problems, they usually make adjustments. Ask physio to speak to OT, they can teach you how to fall, so you hurt yourself less.

Give yourself a break, you are doing really well.

(((hugs)))

stickywicket

Hi Starburst. How are you doing? I hope things are a little easier but you know we're here if they're not.

Starburst

Thank you so much for the supportive words. They mean so much and gave me food for thought which is why I took some time replying. I actually felt better the minute I pressed send. It felt ok to let the mask slip and admit I'm not emotional super woman. I find it tricky to show my vulnerable side. Everyone is so proud of me for overcoming my depression and keeping out of hospital that I feel guilty for showing my emotions but I'm only human and one with RA at that!

A walking stick or crutch has been suggested to me and I have thought about it but I'm not quite mentally ready yet. I feel like, at the age of 23, if I start using a stick, I'm resigning myself to using one for the rest of my life.

Thank you for making me feel less alone. Thank you for taking the time to read my words. Thank you for taking the time and thought to write something that genuinely helped me. Thank you for being there. Thank you for accepting me the way I am, warts and all. Thank you for understanding. Thank you for giving me the space to vent. Thank you for making me feel safe enough over the last 2 years to express my true emotions.

I've been thinking of things I can do to help myself:
* Lose weight - I've already lost 10.5lbs since mid January
* See the uni counsellor - going to pop in tomorrow to see if I can make an appt
* Do my physio exercises at least once a day - so far, so good
Make an honest list to take to my rheum appt - have started it, it's long!

Sorry if this was a bit jumbled and all over the place. I'm tired! Bed time is at 9 p.m. these days!

stickywicket

Starburst, that third paragraph of yours contained a lot of ‘thank yous’. But has it occurred to you that you could turn it on its head and apply every one to yourself? You have done all of this for others on here. You have earned the right to have it done for you.

I think your resolutions are excellent ones. They sound simple but will demand a lot of you. There will be hiccups but don’t give up. Just start again where you left off.

I understand your feelings about a walking aid. Just bear in mind that an aid today is not necessarily an aid for life. You have very specific difficulties right now. But, you are in charge and must do things your way.

Starburst, I was older than you when I finally admitted I wasn’t superwoman. (Some days I'm still not sure.) Independence is good. Interdependence is better. Someone who emotes all over the place can be nauseating but everyone needs somewhere where they can just drop the mask and be themselves. It makes us stronger and it's one of the great values of this forum.

(It wasn’t at all jumbled. It was very coherent. You’re doing great.)

skezier

Oh Sophie tis no wonder your positivity has gone for a min.

Flower you been through the wars some there and I know how hard it is to be young with this shift! Like you say you can't say how you are cus everyone's so busy saying how well you cope they forget to ask if you actually are.

When is the next reconstruction? Will be in your pocket for that one and so hope it will go well, its no joke is it?

Its often the way that the flare comes in when your down, they say stress is a major factor in flares but Sophie small wonder your stressed.

After any fall you feel vulnerable flower. I am lucky I only hit the ground so far but they do shake you up, jar you and leave an impression your going to do it again.

A stick or crutch... i get the not yet mentally ready thing but it might really help for the bad days if not all the time? I wobble and forget where my feet are some of the time and thats when I use one....

Recently i have found a rollarter helps me but like you say its a big jump to realise you need one.....

I know it feels endless but it does get easier flower so hang in there and try to remember there is a better day coming for you when it all backs off and you feel a lot better.

Mean time you come and tell us how your feeling, we may not be able to help but we can lend you support and care.

leaving you a hope that day comes soon, a bucket f understanding and a ((((( ))))) Cris xx

traluvie

Sending positive vibes and higs ((((()))))) hope you feel better soon.xx

Starburst

Positivity has somewhat returned. It was lurking in the dark corner of my cupboard. Thank you all for hearing me. I'm ready to get the boxing gloves back on and fighting.

On a very good note, I got approved first time for DLA without a medical and I'm going to be receiving low rate mobility and middle rate care. I'm looking forward to the independence this extra money will give me. I've already made plans for the weekend. I can get there and back in a taxi without relying on anyone else and without counting the pennies (like the poor student I am) 'cause I have a few extra!

Love to all for a P.O.S.I.T.I.V.E weekend!

tjt6768

that is good news well done you

mig

Have only just read your post,got so far and was nearly in tears,kept reading and it all got a lot better so glad it did.(((()))) Mig

stickywicket

Great news, Starburst. The return of the positivity plus DLA. I'm very pleased for you.

skezier

Hi Sophie,

Glad your out the cupboard now flowr and going to sneak in and nail it shut for you as well

Good news re the DLA, well done you. ((((( ))))) and a hope you have an easier week. Cris xx