Seriously lacking it.

Mat48

Hi All. I don't know what is happening to me and need an offload - sorry. I am constantly having to hide in the bathroom because every email from a friend has me weeping - (hiding tears from sons, dogs and OH) and I don't know whether I'm coming or going with my RA. Am on Prednisolone, just dropped down to 10mg at GP's instructions. Not sleeping, can't concentrate, everything vaguely fizzy and aching - stomach mean like a rat is gnawing - feet sore, ankles rotten. My will to pick myself is flagging totally. Have been referred for CBT but nothing has come of this yet - am told it might be ages. Worst of all - I can go to sleep but can't remain there - wake in the early hours everynight and that's me done. This just isn't me and I feel such a failure for not being able to hold my head above the water.

I try really hard, walk the dogs even if hobbling, work, take the drugs I'm given until I just can't anymore. Seems I'm going to have to make some choices between RA and drugs when I see my rheumy in a month but I don't know how to despite educating myself about the options. I'm hating this self pity because I'm mobile and only feel vague flu like ache apart from ankles and toe pads. But my confidence has all just gone away. How can I find it again? Suggestions appreciated - "pull yourself together Mat!" being the obvious one of course :roll:

[Deleted User]

"Pull yourself together, Mat" seems not to be the option right now. My advice would be the same I was given some days back. Let go for a while and accept the situation as bad as it is. Just for a while. Pulling yourself together will cost energy that is needed elsewhere at the moment, I guess. Hey- that is no self-pity in my opinion. It's just a bull situation one can't always handle as a hero!

Mat48

Thanks Caliban. Cooling soaks of legs and feet are being undertaken as suggested by you. I am trying so hard but have an overwhelming sadness all the time. I long to be dumped in some remote (but warm and comfy) cell on a grassy mountain and not have to play ball with friends and family anymore. I want escape and relearn how to sleep again somehow. I think that's the main thing that would help me cope better again. Its been 3 months of insomnia now - even strongest sleeping pills don't work anymore X

[Deleted User]

autogenous training could be a path to be taken. I know a lot about insomnia, though right now that is not the problem so much. I think you just should try to forget the people around you and be as it is. Sorry, but proper advise is really hard to give.

chookgate

Sounds like you need a break. I know getting ready and packed for a holiday, and also the aftermath (unpacking and washing) is a lot of effort and might be beyond you (it was me!), but if there is someone who can help with that, can you get away somewhere where there is nothing you HAVE to do for a couple of days rest and relaxation? Just somewhere with absolutely no pressure to do anything, and a total break from normal routine might be just what you need.

dibdab

Just wanted to send some really gentle hugs (((((((((((( ))))))))))). RA is a constant companion that so many of us would rather be without, and there is simply no way to explain it adequately to those who don't experience it for themselves. Please don't beat yourself up-I'm sure that many of us here have reached that "end of the tether" place and not known how to deal with it.

It may be that the steroids have some part to play in your emotional state- I know that when I take them for short bursts to control my asthma or RA I am awake almost 24 hours a day, and after a few days that in itself wears you out. Pain is demoralising and dehumanising, maybe it's time to ask for more help- could your OH or children help around the house perhaps? Maybe your doctor is the 1st point of call- they have experience of drug interactions and side effects and may be able to offer you more support to tide you over until things calm down a little?

I've been in that place of battling along feeling increasingly weary, tearful and out of control, and it's a lonely place to be. Do keep talking, try to explain to your nearest and dearest how you feel- they can't guess if you don't tell them. For me it culminated in leaving teaching at the age of 55 after 30 years in a job I loved-I really thought I would miss it, but I just feel so very relieved not to have to struggle with it any more-I've had a bad few days with lots of pain and little sleep, but at least now I can catch some sleep in the daytime if I need to.

I really wish I could help you, but all I can do is offer some understanding and encouragement. I do so hope you can find the courage to ask for the help you need to face your struggles right now.

Take care

Deb xx

barbara12

Hi Mat
I find the confidence thing is top of my list at the mo...its hard to take...so we will go and look for both... :roll: don't worry this feeling will pass but you are allowed to wallow form time to time...it will do you good to get things out...

Mat48

Thanks so much to all of you it's enough just getting it off my chest on here and getting your support.

I can't go away just now - lack of funds, work and son plus dogs. OH does 50% of domestic stuff at least and he works nights - I'm very lucky he enjoys cooking. I think that's part of the problem because I'm finding it so hard to concentrate I'm not even working as a freelance artist just now and that's my thing so I feel extra superfluous and a drain. GPs do what they can for me but as I'm under a consultant and seem to have horrible responses to lots of drugs - they are understandably wary re my unconctrolled RA. I admit I struggle to tell them how I really feel - tend to fall back on humour. But they do both know I've been depressed because that's why I've been referred. Mat x

Sezeelson

How long have you been on the steroids?

When I was on prednisolone, I felt exactly as you are describing and couldn't for the life me sleep. At all. It was really horrible and lasted until a few weeks after getting off them.

I suffer from depression anyway and I take 40mg citalopram every night which just helps to take the edge off.

It's the hardest situation to be in as it feels as there will be no end to it and no way of escaping the feeling. Make sure you have a bedtime routine and don't touch any iPhones or iPads etc. after 6pm, they play tricks on your brain to make it think it is day time and will inhibit your sleeping more so.

As hard as it is, you really need to accept what's going on and stop hiding it from your OH, they are there to support you and the more you try to bottle it up the worse it is going to be for you in the long run.

Good luck!

Mat48

Thanks Sezeelson. I am glad someone else knows how hellishly bad steroids can make a person feel.

I don't think I knew depression before RA hit a three years ago - even though both my parents died suddenly quite close together and I've had to support my two sisters and a close friend through bereavement and had several family crisis's to take on board as big sister now that both parents are gone. My OH works so hard I can't really continually tell him how I feel so I've stopped because it seems pointless bringing us both down and there's not a lot he can do. He does know really and always tries hard to get me out of myself and encourages me to work. I just try hard not to cry in front of them though as I know they will only worry - especially because the middle son is only home from uni for a few more days. So I am bottling it all from them as much as I can. I started on Prednisolone ten days ago - only 20mg and I did know this is how steroids make me feel - as did my doctors. But the inflammation in my feet and generally was getting too bad and I have a while to wait to see the rheumy to discuss what next so it seemed the sensible thing to do.

I was put on Mirtazapine for depression a month ago but only lasted 2 weeks on it before the constant hunger and drowziness got to me.

I will really try not to go near my computer or iphone tonight and see if it helps. It's not usually the getting to sleep part that's a problem it's staying asleep. I've always suffered from insomnia to an extent but this is ridiculous - only 2 or 3 hours a night excepting for when I take a zopiclone sleeping pill and then I'll get five hours if I'm lucky! XX

Boomer13

Dear Mat;

You certainly need not worry about being a failure at being sick; we all are to some extent. While in the thick of all your symptoms it is impossible to maintain yourself the way you want to. It's all so overwhelming and you can't expect yourself to keep your 'head above water' we are just not that much in control after all. It's totally understandable that you are feeling as you do. I am sorry, though.

Do not worry, you will get through this. Give yourself a break, rest, you are only human after all. ((()))

Anna

Mat48

I feel a failure for not being able to tolerate the RA drugs to date really. I just feel my rheumy and GPs will give up on me soon if I don't find one I can bear. But lumps on neck and ears, foul tastes 24/7 - icy numb legs and feet etc - heart racing adrenalin pumping and moods like a rollercoaster ride - collapsing on beaches with chest pain. Well I can't bear these it's just a fact. Big hugs to you Anna XXX

Boomer13

For what it's worth, I think you are very brave. None of this is very easy is it? xx

I'm looking forward to answers for you. Bring on your next rheumatology appointment. Failing that, I'm going to have to come and get you and take you to my rheumatologist!

DebbieT

To me you sound depressed.

Please don't be offended but I've noticed that you rarely comment on other peoples threads, I know it can be hard but that may actually help you, It may help to stop you from solely concentrating on ureself & ure own problems which I think is a big part of ure problem

I've suffered with depression & anxiety for a long time, unfortunately, I've been on antidepressants for a number of years, high doses too. Earlier this year I started counselling as my youngest child had been sexually assaulted. I wasn't coping at all well with the anger & other emotions it brought up. I've lowered my dosage by 1/5th & Im ready to lower it again, even tho my wonderful Dad passed away ONLY 4 weeks ago That's a big step considering all I have & am still going thru

I can not recommend counselling highly enough, with or without cbt, it really should help you!! They often have courses available they can send you on too such as pain management, coping skills, dealing with a lack of self confidence etc

You didn't elaborate on the emails that are making you cry but I'd advise not reading them whilst ure feeling this low!! Also if you aren't on them already a stabilising dose of antidepressant would possibly be beneficial & if you are on them then perhaps they need adjusting?

I really hope your mood picks up asap Mat. Please talk to ure gp again.
Sorry I've concentrated on only one part of ure thread ... I would just hate a possible steroid reaction to be perhaps masking a deeper problem

Rest as much as you can even if you aren't sleeping. I truly feel for you with the insomnia, I've suffered since my early teens!!

((((( )))))

xx xx

stickywicket

I'm very sorry you're feeling so bad, Mat, but a failure you are not. What you are, I think, above all, is depressed and no wonder. You have been struggling for a long time and the struggle is wearying both physically and emotionally.

Why not see the doc about going back on the anti-deps? If drowsiness is an issue maybe a smaller dose. As for the hunger – right now that's not the worst of your problems. Just eat the good stuff when you feel hungry and don't buy in the sugars and fats. You can't eat what isn't there.

Sezeelson's 'bedtime advice' is good. Have a routine that winds you down and that your mind will recognise as the preliminary to bed. Have a bath or shower, read something undemanding, have a hot drink (no caffeine after 6pm) and just let everything go.

Take things one day at a time. Forget about the next rheumatology appointment. It's too far off and, in any case, why not let the rheumatologist decide what you take? You can point out any past difficulties with each med.

You don't need to take all decisions yourself and you don't have to be constantly protecting everyone from your pain. Just try to let go. The world won't fall apart. Really.

Mat48

Again thanks to you all. SW you are very kind and I'm about to switch off all positive irons and read my Kindle. Actually does the same thing apply to a Kindle seeing as it's electronic? Oh heck I might just have to go back to paperbacks!

In response to the suggestion that I get more involved on this forum - I've been around a lot today and usually have periods of coming on and chatting and trying to offer cheer and advice. The unwitting selfishness of the depressed is a good point though and I'm not really that person so thanks for reminding me to chip in more often for others too. One of the best things about forums is the sense helping others and sharing the ups and the downs. There have been other reasons I only come here intermittently but it is a very fair point you are making and I will take it on board from now onwards. I'm so sorry to learn about your daughter - that must have been truly awful and I sympathise with you immensely. I see my GP again on Monday about the Prednisolone and plan to ask her about my CBT referral then. Mat xx

Toots

Hugs Mat x It certainly seems like you're expecting an awful lot of yourself and I agree it's time you gave yourself a break. Whilst I totally understand that you're trying to hold yourself together because of your family and present circumstances, if you can't let go with them, where can you? When I say give yourself a break, I don't necessarily mean physically, I mean mentally. You're sick and every once in a while you should give yourself permission to just feel crap and not worry what everyone else might think or say. More hugs x

thistlegirl

hi Mat, putting it bluntly as others have said you need to give yourself a break. You can not cope with every thing all the time, nobody can.

I take it you work from home if you didn't I would be telling you to get signed off foe a couple of weeks to recover. I worked through a bad flare and no sleep for months and only stopped the day before I was hospitalised for a fortnight as I had become so immobile. I didn't realise how bad things had gotten until I was forced to stop and look around, my body couldn't cope and I ignored it and then payed the price.
I also wasn't honest with my gp, like you humor is my deflection and although now she calls me on it- damn her!

It is good to ask for help, and being honest here is a great start. can I suggest writing down what you are having problems with, what you want/needs the gp to know then putting that list away for a few days and having some "me days". You said your husband cooks which is great, can you tell him you are off sick til friday? what do you think will help you recharge your batteries to get you through til you see the gp?

Steroids mess with you and the lowering of the dose can cause issues so your body may be adjusting to that as well as everything else so please take it easy, hug your husband and son and relax. I know this is easier said than done. You said you are an artist, is there any small fun project you have been unable to do because of paid jobs? maybe something you can start for Christmas? I am off sick now and have been knitting hats for innocent smoothies big knit as they are very quick to do and fun- sense of achievement, fun and keeping me busy if and when I want to. Is there something like this you could do? It must add no pressure to you just occupy your mind enough to switch off.

All of the above is just my humble opinion but I hope it and the other comments help, we are all here to help when you need us.
I have found this forum has saved my sanity the passed few months as I have been able to say things here and get advice which has then made it easier to say in the "real word"

hope you get some sleep

thistle

Mat48

Thanks for your kindness Thistle. My laptop is playing up as are my settings so I'm resorting to iPhone and can't easily respond. I slept for 6 hours last night which is record for me these days. My husband came off a nightshift earlier and told me that he's been thinking hard about this and believes I've spent too much time on another forum as a volunteer and I need to be more part of the family again instead of hiding in my room or the bathroom. I think he is right when he says that all my bounce has gone and I've become withdrawn and insular over the past four months. Going to make a bigger effort to move on. And yes I'm also going to rest a lot because sleep is key so I'm going to stop beating myself up for getting low too and stop hiding in the bathroom to cry! Xx

Kittkat

Hello there
I find sometimes having a time to just feel sorry for yourself can help you feel better. Hope you get some luck with the cbt never had it but am reading up on it . Hope you feel better soon

stickywicket

Mat48 wrote:

My husband came off a nightshift earlier and told me that he's been thinking hard about this and believes I've spent too much time on another forum as a volunteer and I need to be more part of the family again instead of hiding in my room or the bathroom.

I like your husband Listen to him, Mat. He's right. You are not 'a failure' but neither can you be Superwoman. Take a break from the volunteering (not a permanent one) and re-charge your emotional batteries. You'll be a better volunteer for it.

elainebadknee

Debbie

I don't think now is the time to state how many times someone comments on other people's threads. On forums there are groups of people who have empathy with certain conditions, other people, etc. Mat wouldn;t have posted on here had she (sorry I keep thinking of Mat in the male way) thought it would result in criticism of herself further. I am sorry but someone once sent me a message very similar to the one you typed and it didn't help one little bit. What works for one person may not work for another and counselling may work but some people don't feel comfortable opening up to someone who they feel they cannot relate to...
You may have had the best of intentions but to me it seems an opinion could have been held back....

Elainexx

dibdab

Hi Mat,

Just wondering how you're feeling today? Sending a few more positive thoughts and gentle hugs your way! ((((((((((( )))))))))))).

So glad that you had a good chat with your OH- keep talking, it's how we understand each others needs and fears.

Take care

Deb xx

dreamdaisy

Hello Mat, I apologise for being AWOL but - oh, who cares? I too think you are expecting far too much from yourself, I know you have had guests and I expect you have been running around making sure that they are comfortable etc at some expense to yourself. It is not easy learning to switch off, it takes time and a 'lorra lorra' practice (as Cilla might say) but knowing when to stop is the key. I have been flaring for over two weeks, this morning I thought I was doing better so went ahead and did one thing too many (forgetting my own 'sage' advice about stopping when you think you can do more. Dopey cow.) The result? Snoozed all afternoon to prepare for the rigours of the evening (such as they are). :roll:

I hope things are at least a little brighter today. I wish you well. DD

applerose

Hi Mat. I think the others have given you a lot of good advice so I can't really add anything more. I think you should listen to your husband's advice too. He obviously wants to help you. Relax and let it go for a while and have lots of me time. (((hugs)))

DebbieT

Elaine I was going to explain myself to you but ... Why should I? Mat knows the intent with which my comment was meant & it wasn't criticism!!
Thanks for yours of me tho, it was really well thought out & kind hearted.

All the best ..........