Hello Lucy here

Lucy14

Hi
Joined the forum today feeling really low at the moment.
Born with undiagnosed hip displacement...caused problems all my life as was set incorrectly..
Had fun made of me at school because of the way I walk so try my best to look "normal"..
In short op on knee to stop it dislocating..hip replacement needed most of my life but held on until I was 50 and the ball was coming out of the top of socket, still gives me problems as got some inflammation.
Ops on both feet for Mortons Neroma.
Which has come back.
I now need both knees replacing.
I have damaged my rotor cuff from falling over and have arthritis in my shoulder and lower back pain.
Work for myself as a hairdresser manage this with naproxen and co codamal, and time management..got really good at working and resting, coming home and crying with pain.
I can do this as I work for myself and have been in receipt of DLA..I want and need to work.
Got to change to Pip now and it's brought my depression on, so feeling really low as think I will be punished as I try to make myself cope with day to day life.
Thanks for reading loads more I could add but don't want to bore anyone.

[Deleted User]

Hello and welcome Lucy14 to Versus Arthritis Forum

Sorry to read of your current problem regarding Knee/joints, we have forum users with similar problems as yourself who will be able to offer help, advice and understanding of how they manage their issues. I have found a link that may be useful to you:

https://www.versusarthritis.org/about-arthritis/treatments/surgery/knee-replacement-surgery/

Please contact the helplines team if you wish to discuss anything more personal, the number is at the head of the page.

Good luck and enjoy the forum.

John

Lucy14

Thank you for the welcome John...
Hopeing to connect with people in the same boat as me..
I'm usually quite upbeat and laugh about myself but not coping well with the transfer to PIP thing...x


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dreamdaisy

Hello, it's nice to meet you and I am sorry you have had to find us. I started with psoriatic arthritis in 1997 when I was 37 then in April 2011 osteoarthritis was diagnosed, which came as a shock: I naively thought you had either an auto-immune or osteo, it never crossed my mind that both was a possibility.

I plunged into depression and my GP readily agreed to give me anti-depressants. I intended to take these for a short time whilst I sorted myself out but my rheumatologist disagreed, her reasoning being that if I was stronger mentally I would be better able to deal with the arthritis. She was right and to this day I take a small daily dose of Citalopram.

I am still in receipt of DLA and have been waiting for some years now to be told about the transfer. I can understand your concerns and how unsettling the uncertainty is, I cannot help on that front because it's something I have not yet encountered but many have - the Benefits and Working Matters board on here is littered with people's stories. Sometimes they let us know how they got on.

I hope you find the forum to be of interest - we all get it because we've all got it. DD

Lucy14

Hi dreamdaisy
Thank you for the lovely welcome.
Nice to meet you but sorry about the circumstances.

I've had mine from about 16yrs old, I'm 56 now, but never claimed a penny until I split with my husband around 12 years ago..

Because I had suffered all my life I thought it was normal so was over the moon when I received DLA for mobility.
It has allowed me to be able to work to my best ability with my condition if I loose it don't know how I will cope..

The doctor has put me back on citalopram been managing for around 2 years now...had cognitive therapy and made me understand a lot about how to cope and why I got so messy..
I also found sleep meditation helped a lot.

Initially I went to the Drs because the pain was getting worse and my back has started really hurting and wasn't sleeping well..the day after I made my appointment I got the dreaded letter
Feel like I'm back to square one now though.

Just going to give myself until next week to wallow then gonna sort myself out and hit this thing head on..x

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dreamdaisy

It can go three ways: you are transferred with no trouble, you are transferred with a reduced rate or denied: appeal is the way to go in that case and people are usually successful. I worked for seventeen years (I was self-employed) and was surprised to be awarded the higher rate mobility component but grateful. I still am as the money helps pay for domestic help, fuel costs, aids etc. I am now retired which came as a great relief. I was born with auto-immune troubles so life has never been easy but that was the my norm. The arthritis has been (and continues to be) very debilitating but that's the nature of the beasts.

I've had a long day messing around with fairy lights (I love the onset of the darker evenings so I can set my house a-twinkle) so I'm off to bed now. I'll look into again tomorrow. Take care. DD

Lucy14

Good morning Daisy
Thank you so much for replying.
At the best hopefully I will at least get transferred with a reduced rate, looking at the mobility part it seems to lean more towards severe mental heath.
I am the same as you, I use the money to live on really, I get lots of help and support from family and friends so im lucky there.

I have googled your conditions and really feel for you (i know you dont want sympathy), my friend has rheumatoid arthritis and really suffers bless her. This is one of the problems I have with claiming PIP I always think others are worse than me, but my friend never complains and does what I normally do puts a smile on her face and gets on with it, not many people know how much she suffers.

What self employed work did you do?, Im sure you will agree with me in saying you have dragged yourself to work on occasions, with me its no work no money! This is one of the reasons im terrified of having operations until I have no choice, people are fickle I could lose my business its small as it is.
I waited until my hip was almost out of its socket until I had my replacement, then 2 weeks after I was on a perch stool putting a colour on, where there's a will there's a way lol.
How wonderful that you have been able to retire that must have been a welcome relief!
How are those fairy lights looking? bet they look beautiful..
Got to psych myself up for work, really not feeling up to it today, but needs must, well its either than or sit here feeling sorry for myself.
I could go on and on, its really helping me to talk,I feel so worried and down...hope you dont mind I do tend to ramble..xxx

dreamdaisy

I've never googled my conditions and never will. I know my reality, understand it and accept it, after all I cannot change it. I started the meds for the PsA far too late for them to make a difference I can feel, it's all different now and that is benefitting others which should make me pleased but just reminds me I missed yet another health bus. :roll:

I was a tutor for dyslexics, initially I would go to them but as I deteriorated they came to me, which oddly meant I could fit in more clients so ended up working harder. My students became very used to being dosed with hand gel when they arrived and after every sneeze (my meds reduce my immune system leaving me more open to infections) - eventually they had their own sprays on their side of the desk. I finally stopped because my concentration was shot thanks to pain (I'd also had a double carpal tunnel op and the recovery from that took longer than expected).

I have always preferred winter to summer as my body comes under a reduced attack from the natural world. My osteo prefers the winter too but I can control that one to a certain degree. I have always loved the sparkles and twinkles of Christmas, now I carry it on throughout the year as it lifts my spirits. I know that others are worse off then me but my challenges are just as valid and worthy of consideration. I daresay I could apply for other benefits but financially I am OK. The DLA was a supplement to my income (to which I was contributing through paying tax) which sweetened the pill.

Everyone has days when they drag themselves to work, it's just that somehow for the likes of us it's most days. I miss the distraction of seeing and chatting people, that would always take my mind off me but there are many ways I can do that. Counting one's benefits is hard (the negatives are always a stronger pull than the positives) and it is very hard to maintain a positive outlook (I've written about this recently on the Living with Arthritis board on here in the aftermath of a holiday). I see no point in moaning and whining, it is boring for me and those around me (and achieves nothing) but there are times when a good whinge is beneficial: we are the ones who matter. DD

Lucy14

Hi there...
Im totally with you for not googling your conditions, I only googled yours so I could find out a little of what you are going through,
If we googled half of the things wrong with us it could come up with all sorts, I never looked into my hip replacement as was just to scared at what i might see.
so sorry you feel you missed the bus, but it is amazing how things move on, my hip would have been picked up nowadays and hopefully have been set correctly, It was negligence really.

I admire anyone who teaches, wish I had that sort of patients, maybe you could help me lol, I really struggle with spelling and reading sometimes, can understand whats being wrote but struggle to pronounce and recognise some words, if that makes sense, thank you who ever invented spell checker.
I always say my legs are dyslexic.
Its good that you was able to work from home, I do that a lot too, I feel it give you much more control in your own home, and it sounds like you had your pupils well trained bless um.

I love the summer, hate the dark nights, but understand what you are saying about all those nasty bugs multiplying in the heat, however I do love a crisp winter morning with the sun shining makes me feel good, but not good for my joints.
Awww christmas all year round in your house then, do it if it makes you feel good, and so many lovely twinkles around all year now.

We all know people worse off than us but i have a little saying there that goes, just because someone has two broken arms, doesn't make your one broken less painful, some people think its a competition to see who's worse off.
When your time comes to change to PIP you should be able to claim for other help than just mobility you may have no choice looking at the mobility part.
I have been pretty much the same as you in the respect that I was happy with what I got and didnt want to be greedy. I have not paid much back in recent years but paid into the system for years before. You are very lucky that you are financially ok, i suppose I am too at this moment in time, should have been better off as I helped my ex husband to set up a good business but he ruined all that with drink.

I always struggle to get off to work but always glad to go, love my old dears, cheers them up to see me bless. Its the best therapy making someones day!
I was always brought up to go to school or work no matter how ill you feel, if you still feel bad you can always come home, 9 times out of 10 I stayed, even went with appendicitis lol..

I will try and find your post with regard to maintaining a positive outlook or not as the case may be..
and yes we all love a good whinge nothing like it haha..

Hope your day is going well.
Speak later has took me ages to write this...xx

Lucy14

ps can you send me a link to your post please x

dreamdaisy

No need for a link, you found it and posted a reply, thank you! I'm gearing myself up for a busy day, I might be back later but if not definitely tomorrow. I am one of the very few who posts on a daily basis - I will reply if you post but it may not be immediate: bear with! DD

Lucy14

dreamdaisy wrote:

No need for a link, you found it and posted a reply, thank you! I'm gearing myself up for a busy day, I might be back later but if not definitely tomorrow. I am one of the very few who posts on a daily basis - I will reply if you post but it may not be immediate: bear with! DD

Hi Daisy...yes I found it in the end thank you...
Don't worry about replying immediately life gets in the way sometimes...
I'm doing the same need to go to work..
Whatever you are doing have a fabulously day lovely lady xxx

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dreamdaisy

Well yesterday was a wash-out in all fronts. Horrid weather and debating whether to do one of my immuno-suppessant meds did not make for a good time; I eventually decided not to and mucked about with fairy lights instead of doing the ironing and stuffing the duvet into a clean cover. I did the injection today and have had another site reaction which is a bit of a nuisance but hopefully Piriton will sort it out. Today is much brighter and colder (my favourite kind of weather) so an unaided walk to the park is on the cards. What are you up to? DD

Lucy14

Hi Daisy
Hope you managed your walk in the park today, nice day for it, and
hopefully your Piriton has kicked in now and you are getting some kind of relief from your medication.
UUMMM fairy lights ironing, no competition...fairy lights all the way, my ironing is piled up the wall in the spare bedroom, just tend to iron what I need now days.

Spent all morning again trying to get my head around PIP its still bringing me low, but on the bright side my friend is helping me now, she works in a legal department and understands a lot more than me about legal documents and forms, she is little Miss Dynamite and just what I need, She said the questions are really confusing and meant to mislead.
To me the amount of study involved is what I would imagine the equivalent for a degree would be lol..

I strongly advise you to start preparing and researching now as its a minefield, please dont do what I have done and think its not going to happen, its just to stressful when it does.

I have had a lovely afternoon with my family for my mums birthday we have all been for a meal.
Im worn out now and just going to relax for the evening.
Hope you have a lovely evening looking at you fairy lights.
xx

dreamdaisy

The walk did not happen as I hoped, I set off with the best of intentions and did not get very far. I haven't done a walk for a while plus the site reaction wasn't helping. Hey-ho, time to get back into the swing of walking unaided, I know I can do it because I've done it before but I have let it lapse too much.

The PIP bridge will be crossed when I get to it. My answers will be based on the worst of my bad days and if that isn't reason enough for the healthy wonks who administer the system to transfer me then to appeal I will go.

I am pleased you have enjoyed your day, it's a positive to build a store of good memories to look back on when feeling challenged by health. I managed an unaided walk to St Michael's Mount during the summer and recalling that always gives me pleasure. DD

Lucy14

Morning Daisy
sorry to hear your walk didn't go as planned, but keep trying and good luck to you.
I can do very short distances unaided but need my walking pole for anything longer.

Im pleased that the PIP thing is not worrying you, wish it was the same for me just making me ill, woke up around 4 with pain in my back and shoulder , started worrying about PIP, gave up and got up at 5, Im knackered!!

Its good to have positive memories and was lovely to spend time with my family, I have an 8 month old granddaughter who is a joy, I love spending time with her, as well as my family I also have a lot of lovely friends, im really blessed.

I bet you felt a real sense of achievement on The St Michael,s Mount walk, well done you!

I went to a retreat in Spain earlier this year, weather was rubbish but really enjoyed it, the only downside was the flight and airport should have really asked for assistance.
The last time I had been on holiday was 6 years before, I went on a Nile cruise, fantastic experience even though i never left the boat to take part in the tours as wouldn't have managed it, I did however get talked into doing a hot air balloon trip, what a fantastic experience! so glad I did it.

Today my friend is going to take me out for a walk, we are going to Bosworth battlefield, Its a nice easy walk, I really need to move and am looking forward to some fresh air, i will pay for it later mind you but sometimes its worth the pain.

Have a lovely day whatever you do...xx

dreamdaisy

My nature is not one that is prone to worrying, it never has been. My mother was a worrier so she set a good example in how not to be. My dad was far more sanguine and I have inherited that from him - he also passed on his sense of humour (the greatest gift of all). I was raised on a diet of The Goon Show, I'm Sorry I Haven't a Clue etc., Ma would sit there po-faced while Pa and I could barely breathe for laughing. I never plan conversations because the other person never says what they should and have a strategy for life which runs thus: do the best you can at the time, make decisions based on available information, always laugh and be positive.

After a more active-than-normal summer of 2017 I noticed that I was getting more able with walking so decided to build on it by working with a personal trainer. I still need my rollator when in town (it protects me from the hazards caused by the healthy) but I have been able to walk nearly a mile under my own steam, no mean feat when toes, ankles, knees and hips are all creaking and crumbling. My muscles are stronger and I have more stamina, the pain has not diminished but so what? She developed my confidence in my abilities, taught me to believe that I do could rather than thinking that I couldn't and generally give me the kick up the backside I didn't realise I needed! I still see her from time-to-time to do just that.

I'm off to see a friend today for coffee and she is going to help me sort out a paper lampshade from Ikea, a lovely paper ruffled affair which I'm hoping will look good over the dining table. I am going to wear my bright yellow shoes, The day might not be sunny but I can do my bit to brighten things. I hope you have a good time with your friend and I aim to do a short walk today and every day to get back into the swing. DD

Lucy14

Hi Daisy
just a quick one to let you know im still here, just a bit overwhelmed at the moment, will get back to you soon.

Enjoy your day xx t4591

dreamdaisy

Hello, yesterday was good so today is payback meaning a quiet one: just laundry and a spot of tidying up: deep joy! I hope you are feeling a little brighter today. DD

dreamdaisy

Hello, how's things? I've spent the morning turfing out a cupboard and restuffing it with junk hidden elsewhere, leaving me with homeless junk: the majority is ancient bank statements and other private papersso I need a session with the shredder. I am now resting with the remainder of a Miss Marple I have seen many times and a cuppa. DD

dreamdaisy

Hello again, how's things? We haven't heard from you for a while which is not unknown on here, I hope in your case it means that things are improved. DD

dreamdaisy

Hello, I hope things are going better for you which is why you're not here. They're still rubbish for me but hey, who cares? As I say to my husband it's a case of mind over matter, I do mind but that doesn't matter. DD

Airwave!

You are not abnormal, you have an illness the same as us. Come on over to Chitchat or LWA for a cuppa.