Trying to adapt

Hello everyone, this is my first time I have posted a blog. I was diagnosed last June and after a couple of failed treatments I am now on my eighth week of Methotrexate. I feel I have had everything thrown at me with all the side effects and only after a good talking to from the O T nurse four weeks ago I have finally admitted I have got it.. Everybody I have spoken to has said that it is worth staying on the Methotrexate because the side effects get better and soon I will feel it has been worth it.

So the biggest thing for me was adapting and because all my life I have been a person who likes everything in its place and my hair always nice and I loved my shoes and handbags I have started to adapt.

First thing was because I cant carry the handbags because my wrists are bad I bought one of those bags with the long handles that go over the body. It just fits my purse, phone and glasses in but thats all I need instead of the kitchen sink. Then I went to the hotter shop and got myself a pair of shoes that feel like walking on air but look like, well I wont put it in print..

Then because of the hair loss I have now got my hairdresser to do my hair every Thursday instead of me going once every six weeks., I wash and dry it and she puts the curling tongues on it so I have my hair nice at least all the weekend.

When I am feeling a bit down I ring one of my friends and the first thing they say is "how are you " so I say "oh im rubbish but tell me what youve been up to" they know I dont want to talk about me and we have a good chat and I come off the phone feeling better.

The other thing is the housework, that doesnt bother me as much because my husband does a lot of the heavy work. I sit and look at the windows needing doing and all the other things that need doing and then I think, does it really matter, the people who come to visit are my friends.

So although I am slowly adapting I would really appreciate any tips. I noticed one lady had a press to do her ironing and another had bought some nice shoes. If you could say what things had helped in you adapting and where you can get things from I would be very grateful. Looking forward to your tips. Thanks

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  • Hi, you definitely have the right attitude - adapting is the name of the game. Keeping positive is very good.

    Hair loss due to mtx. will stop eventually (at least mine did - I'm sure others here will confirm this).

    Hair: I can't manage curling tongs but I do manage the good old fashioned heated rollers.

    Shoes: someone on here again will give you some makes to google (there have been many conversations regarding this so if you type in 'shoes' in the box at the top right hand corner something shoulld come up. Also ask your rheumy team if you can see a podiatrist (know I've spelt that wrong) they can make insoles for your shoes which may help you.

    Housework: do what you can, when you can and leave what you cant do until tomorrow. (As an example, I always say it's just as easy to get 2 days dust up as it is to get 1 days - eventually it gets done). Regarding your windows, could you manage just one pane today and another one tomorrow? Sometimes breaking things into smaller portions of housework is more manageable. (At least I find it more manageable). I used to look for perfection when I was cleaning the house before RA but not so much now. You are right about it's friends visiting your house - remember they knew you before the RA days and hopefully once the meds. are sorted things may improve a bit.

    There are always the odd days when you will feel down, (why me?) this is to be expected, it is unfortunately a feature of RA.

    So here are a few tips from me: when you see your rheumy team (consultant or nurse) take a note of the questions you want to ask them, we never remember everything. Get a direct help line telephone number for your rheumy nurse and ask her anything you don't understand, they are usually very good (at least mine have been). Also don't forget your GP is also there for help or advice.

    Over a course of time my husband changed the taps on the kitchen sink, hand basins and bath to the winged type as I had problems turning taps on. Also, door handles were a problem so again he changed them to lever ones (they were round before). If you google DIAL and find your nearest one they can advise you on what help you can get financially. If you drive and have problems reaching parking meters, need more room to get in and out of the car (and etc.) you may be entitled to a blue badge which is always helpful when trying to park on the many visits you are likely to too make to the hospital.

    My sore feet and hands respond well to a soak in cold water (others find warm helps them more) it's just a suck it and see scenario.

    Oh well, hope some of this helps a bit.

    Judi

  • Judi, i'm the one with the press,i wouldn't be without it. They now cost about £100 and upwards. I have litter pickers to pick up things that i drop. I have a stairlift to get up and down the stairs. There are some nice shoes about if you look,they have some insoles in them. jd williams are a catalogue and they have some comfy shoes and they do lots of pretty colours. Store 21 also have some nice shoes as well.

    I have a set of cutlery with thick handles so i can eat my meals,same goes for pens there are loads out there with chunky stems so they are easy to handle. Front loading bras so they are easy to put on. I have also invested in reclining chairs and i have a work table sat by my chair so that i can work on my laptop without having to get up and go into another room to use the big computer.

    Hope this is of some use for you.

    Happy shopping. Sylvi. xx

  • It is great that you have such a positive attitude and that you are adapting bit by bit - it's hard. I live in France and find that most of the shoes here are really high fashion ie very long pointy toe ends, high heels etc - ouch say my feet so I get my shoes mail order from Rohde, mephisto and Hotter. They are really comfy and some are fashionable, most of the styles also have removable insoles so that if you have specially made insoles like me you can put them in with no problem. I think that you can get all those makes in the UK shops - not cheap but worth it from the comfort point of view. Good luck. Wendy x

  • Sink taps, I got those tower lever mixer taps which are beautifully designed and perfect for us.

    Walk in shower- the people in this flat before us adapted a big cupboard and we tarted it up.

    Tai chi for gentle exercise of joints and muscles

    I think ones attitude is important, perhaps a mix of determination to keep things going and acceptance that I'm going to have to let go of some things and adapt others. But it ain't easy

    Xx

  • If you can afford it, you could remove the bath and replace it with a large shower. We did that, but my husband grew up in France and wasn't really used to baths so he was only too happy

    Xx

  • I really hope I don't offend anyone with this but really want to tell you...

    When I was diagnosed Feb last year I cut my long hair short because I could hardly brush it, I got rid of my Heels as I could only wear crocs, sold my Baby's pram as I couldn't work any catches, cancelled holidays and I could go on but you know what it's like.

    I'm one of the lucky one's that medications have worked, it took 10months but I was started on all 3 dmard's including methotrexate at once, but looking at the stats there is every chance that you'll get there to.

    Now I'm going nuts waiting for hair to grow long again, have had to go shopping for nice shoes again (maybe not the 5inch heels but 2inch I can manage), I've booked a holiday abroad and the prams not an issue plus we go everywhere on the bike!

    Your early in your diagnosis still, don't give up your nice shoes and handbags just yet.

    and, my windows are still filthy! :)

  • Thank you so much for all the tips and advice you have given me. I will have a look at all the websites today. I am going to get a front fastening bra definately and look at a press. I do really believe I will be a lot better in time and hope I can write a blog like Wiliby. In the meantime I will take your advice and take each day at a time. I am going for a steroid injection tomorrow so I will hopefully have a good Easter. A couple of other questions I have is has anybody had a bad reaction to drink, ie.wine or spirits. I dont drink at home but we went out a few weeks ago and I had a couple of glasses of wine and was up most of the night. Also I have developed a spare tyre just above my waist. Its as if somebody has said now you are on the tablets uou can have one of these. I am always on a diet of some description and I wondered if anybody else has noticed this change.

    Thank you once again

  • Hi Dover,

    The spare tire? Yes. Steroids are one factor in creating one. But we weigh the pluses and minuses..

    Everyone has had many great, helpful ideas. I want to add, the one single thing that has helped me adapt is: an office-style chair with pneumatic lift, that allows me to work in the kitchen at counter-top height, has 5 wheels so I can scoot between the refrig, stove, microwave and counter, and sink. I can do everything I always did, just do it sitting which really helps with the backand hips and knees. My former gentleman friend bought it for me after one of my spine surgeries, have had it for about 15 years. I think of him everytime I sit on it! He got it from one of the Home Improvement stores, but an office supply store might also have them. Important thing is that it elevates enough to be at counter top height.

    All the best of luck, you have the right attitude and aare well on your way! Loret

  • Good to hear from you Loret, I was beginning to fret that your hands were not good. Hope you're recovering ok from op, and Bridget is also on good form & keeping you company. Polly

  • Bless your heart, Polly. thanks. I am not responding as much, it is still hard to type, using left hand and just middle finger of rt; hand. Others just not quite ready for thefull hand! but, just came from OT and he is very please with just a few days of bending the wrist. Yikes! It hurts after, but I get home and put ice on it for a little bit. He used heat paks before bending it, I think that helped make it not so stiff. Otherwise, just hangin in there, reading alot.

    Hope you have a Happy Easter full of chocolate bunnies!

  • Bridget is being very clinging, just wants to be where I am, except she has her favorite spots on the sunroom floor, basking in the sunspots and I am not about to get down there with her!!

  • Hi Dover I was diagnosed in November but had only had symptoms for about six weeks, I was put straight onto methotrexate which caused nausea at first but it is fine now. I feel so much better and luckily my joints are really good. The main problem I have is with fatigue which I find really hard to cope with as I was always on the go and I still learning to pace myself. At the same time as I was diagnosed with RA I was also diagnosed with ulcerative Colitis which also causes fatigue but I am learning to live with it and now take each day as it comes. We are leaving the UK next week to live in Dubai for three years and I hope the warm weather will help me as the cold makes it worse. I hope you continue to improve

  • hi great you found this blog, it will really help you. My tips: chocolate is good!!!(not for the weight but for the mood), wine is not so good on MTx, some consultants say absolutely NO to any alcohol as it readts with your liver (thus the blood checks) but I have a good Rheumy who says a glass now and then will help you lead a normal life and not do too much damage,but obviously I dont have liver problems so maybe thats why he wasnt too worried. But it does sound like it didnt suit you, so i would try to alternate with soft drinks.

    Steroids and some of the drugs do give u weight gain and I have gaine a lot of weight and the spare tyre. But i figure I am moving around and not stuck in the house because of the drugs and wont get defornities like many of the people years ago before the drugs came along so I'm quite grateful....bu the chocolate wont help lol

    My best tip, pipe lagging!! you can put it round pens, knifes forks etc, in fact anything you wanna grab rofl xx

    Keep Blogging Axx

  • rofl! Allanah!

  • My shower stool - see Cathie's recent question - is great as there's nothing like hot water to get you moving in the morning when you're all stiff. And my ice packs & wheat pillows are very comforting.

    And do try to find a drink that you like that's not alcoholic, I've taken to pomegranate juice as it's not too sweet. As allanah said views vary about alcohol, and I decided not to drink, But as I found recently it doesn't agree with me anymore anyway, and more than a mouthful now makes me ill! How times change. Polly

  • welcome, and what a positive lady, things will improve, accepting RA is the hardest thing any of us can do, things improve, jd williams a catalogue do a huge range of comfortable shoes xx

  • I have an ironing press from Fast Press, and i wouldn't be without it. I have trained all of my family including my 9 year-old twins to use it when I can't. I used to have OCD about housework, now I take all weekend to get it done, and I delegate to the family the jobs I can't. I have hotter shoes - I can only wear strapped on shoes otherwise me feet fall out of the shoe, or I walk out of it, and the insoles from surgical appliance department at the hospital won't fit into any other shoe. I can't even sniff alcohol without getting drunk so I just go without - my brain is muddled without the booze! I use rucksacks/backpacks to carry my stuff in as it's the easiest option for me.

    It is a case of trial and error really, finding out what works for you.

    sending a hug.

    Angie

    x

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