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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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 Hi everyone. I want to ask the question "What is wrong with me" but I already know. Like many of you I am sure, I watched the Royal Wedding on friday and being a complete royalist watched from dawn until dusk and enjoyed every minute of it. It was such a happy day. Yesterday went to Martin Mere birdwatching and had a lovely day. Today I feel depressed. I don't know what to do with myself. I am just crying all the time even typing this. I have just had my thyroxin reduced and mtx reduced and I suppose I have a flare up because of this. Pain everywhere. Left shoulder just unbearable. Just trying to get my bra on and fastened this morning was excruciating. My hair is still coming out in handsful and I am supposed to be going to a party on saturday. It is the 60 birthday of an old school friend and I know there will be others from that era and I look an absolute fright. I can't possibly go and I am upset about that because I know she is looking forward to seeing me. My family is wonderful but I feel so alone and depressed at the moment. Please help. If there is anything at all you can say to cheer me up I would be very grateful. I know I am feeling sorry for myself and whingeing when I know a lot of you will be worse than I am but I feel so unfeminine and miserable right now. Is it the condition or the drugs that make us change so much in 24 hours? I don't know what I would do without you guys. You are always a great help and I know you will be now. Thanks for listening. I hope I haven't made anyone else miserable reading this blog. P.S. M & S no longer stock front fastening bras. Does anyone know where I can get them from?
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sheila Life really is sent to try us at times! Albeit with the best will in the world at times we succumb to what it chucks our way regardless of how much we resist. All in the same topsy turvy boat Sheila, you are not alone in this. RA is such a peculiar beast and so very unpredictable. One day we are 'up' there with the rest of them and the next in the depths of despair for what seems like no apparent reason. It is very hard to build up a resistance to the emotions when you are feeling so low but things will get better for you. Certainly the reduction in the medication will be causing the RA to worsen and I think possibly before a flare really gets tight hold you could do to let rheumatology know. They need to be considering other options to keep symptoms at bay ... left uncontrolled the RA may run riot and then who knows what. I can see I'm cheering you up no end!! But really, I think taking each problem individually and coming up with a plan is a positive step in the right direction. So 1. contact rheumatology and tell them you are in pain and distress and not coping. Can they review medication? Depo-medrone jab in the meantime to settle things? 2. see GP and ask for an anti depressant. Many on the forum are on them and they can be very helpful. It does sound as though you are perhaps depressed and hence the fast turnaround in how you feel emotionally. Even if you take them for only a few months (although they do take a few weeks to work) it may help at this difficult time. 3. go to 'the do'! Try and have an easy week, get plenty of rest beforehand. Book a hair appointment/ nails etc. for Thursday/Friday and choose something really nice to wear. Don't let the RA have you beat! Shove it back in it's own compartment where it belongs, even if for just one day ... it can come out to play (wreak havoc!) on Sunday after you have had a great party. Make sure you get that hair appointment otherwise I'll be forced to jump in my car and nip down the M55 with my scissors  . Others might say you would end up looking frightful ... but I could do you a nice trim with multi coloured spikes and candles on the ends  You would set the place alight ... lovely  Take care Sheila, chin up  Lyn x PS Try justbras.co.uk or figleaves.com , think M&S might do front fastening online?
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Shiela Ah I understand where you are coming from. I too had a busy day on Friday my Daughter and Partner joined in the Wedding celebrations, and 2 friends came round in the evening. THEN I awake on Sat morning with swollen glands, sore throat and also UTI........ So I feel sorry for me as well. I am up on my bed and making myself think of good times. I go to France in 3 weeks, and I am having my toe nails and fingers mancured. As Lynn states treat yourself - Lynn post is brilliant. Good old Lynn (or should I say young). I too am on a low dose anti depressant and I must admit works wonders no shame in it if it makes you better my dear. Take Care
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Thanks Lynn You might not be old enough but you are like the matriarch of the forum. You always give good advice. I just hope I have the courage to do what you say. Firstly. I am going to Scotland for a week on 14th and don't want to be having other nasty side effects from a new drug while away. I know it will have to try other drugs soon but I think I definitely need an inj in my shoulder. Seeing physio a week tomorrow and I think he will ask for an inj for me. You are right about the 'Do' Normally I am the one to be telling people what you have just told me and normally I would be out there and not letting the RA ruin my life but right now it has me beaten. I know I will bounce back and will probably feel totally different tomorrow and maybe able to help someone else in same situation. I might even make the party. There is time to feel better yet. As for the scissors not sure about that. Thanks for your concern and help. Will let you know how the party goes (if I go!) Sheila G x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Sheila We all feel like this from time to time. Don't let the RA beat you. Like Lyn said..........try to get your hair done, your nails and if the budget allows treat yourself to something new. Your friends looking forward to seeing you with or without RA, so don't let it spoil your day. Lyn's given you some good advice re seeing your GP. Hopefully by Saturday the world will seem a better place. Just sending you my love and a big................  Paula x
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Thanks Rose
I know I need to be positive, I just don't have the energy today. Strangely, I am usually awake at 5.30 in the morning but this morning only woke up at 8.45. I had a better night but have more pain and doldrums today. Maybe there is a connection. I know the hair loss is really getting me down. I know it sounds like vanity and I suppose it is but really I don't care what other people think. I know my family would love me the same if I had two heads but it's just the waking up in the morning and feeling bad then looking in the mirror and feeling worse. It doesn't seem fair really. I can usually cope with the wrecked body but the two together is too much. I just want my hair back and to make things worse, I can no longer have my colour as hairdresser said it would make it even worse.
Anyway, enough. Wasn't the wedding wonderful? The dress was gorgeous and her hair well..............thick, long - dream on.
Thanks for listening
Sheila G x
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Thanks Paula
I love this forum. It is so nice to know that people understand. I knew I would get some great words of wisdom from you guys.
I just hope I can follow the advice.
Thanks for listening
Sheila G x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Sheila you are not being vain about your hair.........I would feel the same as well...........the thing that bugs me the most is not being able to wear my lovely high heels anymore. I know in the great scheme of things it's nothing but to me it's part of me and I still dream that one day I will be able to wear them again.
The wedding........it was wonderful. I put the TV on at 8.30 and was still sitting there gone twelve in my PJ's, enjoyed every moment of it. I don't think that any country in the world could of put something so spectacular as that on, all the pomp and ceremony.
She looked so lovely and I really hope that this marriage will last. I am 100% certain that they are very much in love........just hope and pray that they are left alone by the press.
Paula x
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hear hear Sheila. It was a lovely day and she was beautiful
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Sheila, just joining in really, I would also be upset about my hair, its only natural, its a girl thing!! You have had pearls of wisdom alrleady, so I wont say anymore. I hope you do decide to go to the party, if they are your friends they will understand that you cant always be as energetic as you would like. Good luck with seeing or speaking to the rheumy nurse/doctor. The wedding was amazing, Kate looked so elegant and serene. What a lovely couple they made!!! BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hello Sheila
Hope you are now feeling a little better now, and sorry to hear how difficult it is for you just at the moment. I think it brings it home to us when you have a special "do " to go to and it is such an uphill struggle trying to think how you will make it. It would be good if you could get the depo injection done this week so you feel a bit better for Saturday. I was wondering if anyone can give you some advice about hair colourants, I know how I feel when the grey starts to come through !
It certainly was a day to remember, the are truly a lovely couple and just to think one day they will be the King and Queen !
Best wishes Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sheila, I totally understand your post. One minute we are on a fairly even keel ( although not "fine" which is what we tell others ) and the next minute...wham! We do not know from one day to the next how we will feel. I would feel the same as you if my hair was affected, hair is the one thing that can make us feel good about ourselves, if the hair is looking nice, we feel nice! Can your hairdresser suggest a new cut or something that will give the illusion of more thickness? I suggest her rather than Lyn! Do not let her near you with those scissors! As for the Wedding, I agree it was fabulous! I intended just to watch the wedding service but was glued to the box for most of the day. It was all so elegant and regal! Kate and William are a lovely couple. Hope you start to feel a bit better soon and can go and enjoy your do! Love, Doreen xx
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Thanks all of you for your caring thoughts and comments. Paula - I know what you mean about the shoes as well. I am already worrying about hair, shoes, etc for my sons wedding which is in June 2012. Heaven knows what I will be like by then but you never know, God willing, there may even be a cure by then. It has to come sometime. Listen to me being all optimistic!. It must be talking to you lovely people. My husband has just made me smile. I was trying to put something in the freezer and he said it wouldn't fit. I said I would make it fit and he said "yes, you're right. Where there's a Will there's a Kate" Enjoy the rest of the weekend. Love Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Sheila,
just to say hope you are feeling a bit brighter now.
no two days are the same with RA i feel.
agree get yourself booked into a good Hairdresser am sure that will make you feel better and try and make the party, i feel if you go outside of your situation that can help as it's easy to get wrapped up in how we feel. i went on a little break a couple of weeks ago and i forgot ( more or less about my RA ) and spoke to people about totally different things.
i thoroughly enjoyed the wedding and thought Kate looked beautiful and the two Prince's scrubbed up well as did Kate's Sister.
take care,
Suzanne x
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Suzanne
Thanks for your reply. I still don't know what to do about the party yet or anything else for that matter. I am still very tearful today and have exhausted myself with worrying. I am working tomorrow so that will take my mind off it. I teach adults with learning disabilities and mental health problems. They are wonderful and I love working with them. I think that is another reason for my down period at the moment. I am finishing work in 6 weeks time and I will miss my learners so much, although the time is right. I can't continue as it is getting harder and my body is telling me to stop. Oh well! That's life.
Love Sheila x
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Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Sheila,
just a thought .. have you tried phoning the NRAS Helpline number, they really are terrific and very supportive.
they helped me a great deal when i was first diagnosed and scared about starting on the new Drugs. i managed to lose over half a stone in a week that was the state it was in !!
you are going through a transition period with your work as well, having to say goodbye to something you love.
so i'm not surprised you are feeling tearful with all this going on.
there may even be an NRAS Group where you are as well, the Helpline will let you know.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Sheila,
Get to that party! Its important to do things which make you enjoy, make you smile and take your mind off things, even at the expense of the housework or other must do things. A friend of mine was panicing about going to a school reunion because she had put on so much weight but when she got there she had a whale of a time. People will still see the 'old' you. I sympathise about your crowning glory, I haven't got much up top and if it started falling out I'm not sure how I would take it. Although in the end see it as an excuse to get into buying loads of outrageous hats perhaps, my wrist splints have turned into an excuse for buying endless numbers of fluorescent hand warmers and fingerless gloves!
Hope your pecker is up a bit now
Take care
Sara
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hi Sheila
I am sorry that you felt so down. Never apologise for moaning we have all done it and there is no better place to get some love and encouragement.
I don't know about everyone else but after the Royal Wedding (which was wonderful) I did feel a little down myself. I almost felt bereft that I would not know what was happening in their day to day lives after sharing such an intimate experience and being part of the love they obviously have for each other.
I hope you get to your party.
Take care
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
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Hi Sheila I'm just catching up with all the forum posts - since being away. Treated myself to a holiday in Tenerife - which did me the world of good! I was interested in what your hairdresser said, because mine said that colouring the hair was still fine, as it was nothing to do with it falling out! I'm still having mine coloured every 6 weeks - and she's cutting it so that the thin patches remain hidden. I did get very upset when my hair first started falling out - and that was an extra reason for stopping MTX - I was actually really ill on it as well!  Now with the Humira and Leflunomide - I still do have some falling out and a few thin bits. I've had no adverse effects from the colouring side of things. My right shoulder is my problem, and I'm still doing my bra up at the front and twisting it round!! So I'm glad to see some front fastening suggestions too. I think we all find we are very up and down - I certainly am - from one day to the next - so I did restart a low dose of Amytriptyline, which deals with the pain, but is also an antidepressant (5 mg in the evening). It seems to keep me a bit more even - and I don't hit such rock bottom. Fortunately I have two really close friends who I can talk to - and a good husband - who is now beginning to understand more what it's like for me. He's been on holiday for 4 weeks (gone back to work today) and we've been away a lot of that time - so he's seen the RA as it really is. At the moment it is not too bad - as long as I don't overdo it! Can't walk very far at the moment! I've had dilemma's over whether to go to things or not. I'm getting better at being selective and going to the things I really want to go to - but resting well in the few days before, and making sure I have nothing important in the few days afterwards. I do find I seem to find the resources I need to go ahead and enjoy myself (I decided completely resting for a few days afterwards was worth it!!) Now I keep some TV programmes recorded for such occasions as these! Make up (to hide the pale face!) and a good hair cut can do us all wonders! So do think carefully about whether or not you could manage it. You may find the benefits to you generally outweigh the negatives. Big hug Anne xx
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Suzanne
Thanks for suggesting the phone line at NRAS. I had considered this and I know it sounds silly but I can't bring myself to telephone because I know as soon as I start talking I will cry and splutter down the line. I am pathetic!
Thanks for caring
Love Sheila x
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