Struggling anyone got any tips?: I have recently been... - NRAS

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Struggling anyone got any tips?

I have recently been diagnosed with rheumatoid arthritis and fibromyalgia I am only 26 and i am really struggling with day to day chores has anyone got any tips that might help?

Thanks Hannah :)

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Hi Hannah, I'm 25 and also have RA, got diagnosed about 6 years ago. I found the thing that helped me most is asking for help!! Sounds silly, but I was so used to just being able to do everything I carried on as normal and suffered the consequences after! Then just gradually learnt that once you come to terms with your condition and are able to explain to people how you feel, the ones that really care will be more than happy to help you. I found the hardest thing was coming to terms with it, just realising that I couldn't do simple things sometimes like just getting dressed on my own (buttons are a b***h...!) but just admitting to myself that I needed help was the hardest thing but has been the best, because it really helps to have help! I hope you have supportive family and or partner or someone who can be there to help you? Also, make sure you keep going to rheumy clinics and going to see the doc, it will help to lessen your symptoms and flares when you find the right medication that works for you :-)

Hope this has helped and it even makes sense...! Take care x x

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Thank you for your reply. My family are not very supportive they just moan at me and tell me I'm making it up or make jokes about it. When I do ask for help from my mum she tells me to just get on with it. I am also a single parent of a 2 yr old little boy so things can get really hard.

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Try the Spoon Theory, maybe try printing it out and leave it on the side where your mum might see it. I forget people aren't as lucky as me :-( maybe you should also see if there is an RA group or Fibro group near you? Or try your local council to see if they know of any groups that can help you, even if it's not the same conditions as you they might still be able to help. The NRAS team are great too, and I think it's free to call them. Sorry to hear you're having a tough time x x x

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I found this short story really good at helping to explain my condition to my friends, and why I had to keep saying no to clubbing and parties!

The lady Christine has Lupus, not the same as me but it's so easy to relate to! You may have already seen it, but if you haven't I urge you to spread the word of this story, it really is fab and really does help explain :-)

butyoudontlooksick.com/arti...

X x x

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Hi Hannah, have a look on the NRAS website. Also, if you type "gadgets" in the Health Unlocked search bar you will find answers to previous questions. A different tip is does your little boy have a nursery or pre-school place? Some areas have children's centres with the option of full-time & part-time places. And in some areas the places are funded for 2 year olds. They also provide support services. [Forgive me if I'm telling you what you already know] Being able to pace yourself with a 2 year old must be really tough. And keep reading on here - it is the one place where everyone understands what it is like, RAinK

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Hi Hannah sorry to hear you're having such a tough time. When family are a bit hopeless sometimes friends are better. You deserve a bit of help. Is the Dad totally out of the picture? All the best

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Best person to see is the Occupational Therapist. The ones I have seen have been brilliant and have assessed my needs for daily living activities (and even how to get out of bed and a chair). I'm now the proud possessor of lots of gadgets which help me to be as independent as possible, including specialised tools for the garden, a garden seat with handles so I can get up and down, a tipping kettle (take the water to the kettle, not the kettle to the sink), etc, etc.

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I hear you, having been diagnosed with RA at 22 years old. I have a hefty 8 mth old and though not toddling, it's pretty hardcore coping with him and a flare-up of my RA. Hang on in there- can the doc give you a boost of steroids to dampen symptoms a bit until meds properly kick-in? Also, talk to your gp/health visitor- mine have put me in touch with a charity 'Home Start' to have some help a couple hours a week which will be a godsend! Even just leaving the house has become a mountain to climb some days and it will be good to have some help to do the most mundane of things again! Also, make sure you get your priorities right- it's taken me a while, but feel it is better to live in chaos for a bit rather than completely knacker myself attempting to clean (goes against the grain definitely!). Am rubbish at asking for help too but having made the breakthrough, have found people genuinely want to, once they realise what you are coping with, although that can be the hardest bit, trying to explain whats wrong, when as my friend said "but you look so normal"! It can feel like an uphill battle constantly but sites like this are wonderful- it's always good to know that there are people who understand. X

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Hi hannaha123

I have put a link to our useful tips information sheet below. There are also a number of companies that sell gadgets to help with everyday living and I have put links to a few of these for you as well:

nras.org.uk/useful-tips

betterlifehealthcare.com/

abilitysuperstore.com/index...

dlf.org.uk/

Hope these help and you can always call the helpline on:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

Beverley (NRAS Helpline)

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Hey, I suffer the same, I have a 4 year old and one on the way, I totally understand the whole family issue too. I have found that just the sure start centers are amazing, my little girl started nursery at 2 and they also had stay and play days too and a sensory room so that she could play while I rested a little. I find as the day goes on I generally get worse so I have learnt to plan ahead, I prepare everything for dinner while she is at school and i make sure if i need to go out i can do it in the morning so that in the afternoon if i am rather bad we can relax and watch a film and that seems to help. I have also found that the other parents at the school to be a big help as they know I struggle and will invite us over for play dates so that she can go off and play and i can sit down and have a chat for a change.I hope this helps :) im sorry I cant be of more help but I am always here if you need to talk :) xxx

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Thank you all for your reply s I went back to my doctors today he has now prescribed me Tramadol and I have to wear a splint so hopefully the pain will die down in my wrist. :) xx

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Hi Hannah

have you seen an occupational therapist? If not, ask your GP for a referral. They are great at working out other ways of doing things that hurt the joints less. They are also your gateway to free aids/devices that might make life a bit easier.

Other practical things that helped me...

-stop ironing

-keep your food prep area, toilet, bath/shower & sinks clean. Leave the rest till you have plenty of energy & do in little bits

-air dry your dishes

-when you feel up to cooking, make a bit extra & freeze it

-make sure there are always a few things in the house for easy meals - the sort of stuff you just bung in the oven for 1/2 hour

-online shopping saves a lot of time & effort if you live in a delivery area. If you choose less popular delivery times the charge can be as low as £1.50

-if your 2 year old isn't already in a good bedtime routine, now is the time to start

-he can put away his own toys & easy things like socks

-sit down to do as many jobs as possible - peeling veg etc - a perching stool will help

-put the things you use the most in the easiest to reach places

-foam pipe lagging from the diy shop is great for wrapping round handles to make them fatter & easier to grip

-the split rings you put keys on can be bought online for pennies. I put one onto every zip I have

-think carefully when you're buying clothes. It's good when getting dressed isn't really arduous!

-try an expert patient/managing chronic disease course if there is one in your local area (try GP noticeboard/NRAS site.) Very worthwhile & give you back a bit of control.

-never, ever feel guilty

Unfortunately, on the family side of things, all I can say is I understand where you're at. It's so frustrating. I came to my own settlement with it in time. I'm sure you will too.

Stick in there - you'll find a way.

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Hi Livingston Thank you for you reply. I have thought about occupational therapy but wasn't sure how to get it, I will be phoning my doctor about this tomorrow. Thank you for all the tips I will defiantly be trying these out.

Hannah :)

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