How not to handle oneself

gickygawky

Now the moment has passed and given that I have not created a new topic on here for ages I thought I would write down how I have been feeling lately in the hope that it will help and that I can move onto brighter things.

Lately I have been thinking alot of how I am coping with arthur and whether I have reached a stage of acceptance. Sadly I don't think I have and infact it has become increasingly evident that I am furious with the world.

A few days ago I had a rubbish day that included falling at the doctors and hurting two other people, opening my needle hole and making it bleed, getting stuck in a fixed position while out and about and having to stand in one spot for 10 minutes waiting for things to improve, stopping traffic as I couldn't get my leg in the car on a busy road, and being blasted by the outside tap straight into my face as I struggled to turn it off as my hands stopped working properly.

My husband came home from drinks with his colleagues and I decided that it was time I let him know how I was feeling and unleashed fury on his poor unsuspecting self. It was a strange combination of rage, fear and a wild display of yelling through gritted teeth, waving hands and steaming tears.

The thing is I don't even think he understood what point I was trying to make for a good hour as I proceeded to throw in every example of how my life has changed, how wronged I am and how frustrating my whole world has become. Poor man didn't stand a chance but instead of calming down I decided to take it out on him and said some truly nasty things including how horrible he was, how he didn't understand a bleeping thing and how lucky he was to be able to go to work to a job he loves to get away from this mess while I stayed home and sponged off his hard work.

And then he cried. He told me how hard it was to watch his wifes life change before him and not be able to help. How heartbreaking it was to see the pain I am in and resist the urge to 'help' as he knows I prefer getting on with things independently and how much he loves me and that we are in this together despite the craziness I try and throw at him.

And then I cried even more and then we hugged and made up even though there was only ever one person arguing anyway.

I feel so cross that arthur has infiltrated my life to such an extent and has changed its course so much. It has effected every apect of my life one way or another and it has left me completely riddled with it.

Everything has changed and it feels like I have no control and am constantly making sacrifices. I have had to give up the only job I am trained for and which I loved, move house, change lifestyle completely, take copious amounts of horrible drugs and become a human pin cushion. My friends are gorgeous but have no idea what is really happening. My best friend is a hematologist who deals with very sick people in life and death situations everyday so for her my illness is just a matter of grin and bear it, at least you're alive. And to be honest I have become a little like that myself towards other people. In some respects I have become much less empathetic and unless your leg is falling off I don't want to hear about it. This is not the sort of person I am or aim to be but it seems my tolerance for other people has declined dramatically.

And so now I find out that after being off anti tnf's and Mtx in the vain hope of starting a family that the high dose steroids I am on are preventing me from falling pregnant and I may not be able to have a child. And there doesn't seem to be a way out of it. I see my Rheumy again next week and I truly hope there is something to be said that will brighten the outcome of all of this.

I feel invaded. There is not a part of my body that hasn't been affected by arthur and his henchmen and to think this disease is progressive scares the absolute hell out of me. I worry constantly about returning in form to when I was at my worst, when I was bed ridden and unable to perform the most simple of personal care needs such as chew my food or go to the loo.

I found out the other day that my friend who was diagnosed with A.S at the same time as me is now in a wheelchair because he has become unresponsive to his meds. I felt like I had been kicked in the stomach for him and for me. It makes me feel sick when I think of the tight rope that I am walking and how reliant I am on my wretched drugs.

So anyway I think that is enough ranting for the moment. There is no need for replies my lovelies, the aim of this exercise is to vent my frustrations for my own sanity and so that I don't go for my darling husbands jugular when he comes home.

Arna x

kneegirl

Really don't know what to say Arna, but sending you lots and lots of hugs xxx

annie_mial

Arna, I am so sorry that you find yourself in such a place. Your hopes were so high when you moved house it's not surprising that you feel frightened and let down by it all.

There are few words which can comfort you in your grief ('cos that's what I think it is) but I am glad you have come here where support is given wholeheartedly.

Love
Annie

Jo90

Arna

So sorry you're feel this way at the minute. Your husband sounds a very understanding, loving man. Take care of yourself. I hope these feelings can be supported and worked through.

Jo
x

suzygirl

All i can say is, I SO understand.


(((hugs))) to you and yours!

jillyb1

Dear Arna , not much I can say ; but , like me , it sounds as if you have a lovely caring husband . What you're going through sounds familiar to me and I imagine to a lot of us who despair at how life has changed . Please keep talking to your husband about everything affecting you because , as he has shown you , it's changing his life too . Try and cling together and you may find that you continue to grow closer and closer which can only help you both to cope with anything good or difficult that comes along . Remember that we are all here to listen to rants to help get it out of your system ! Jillyb

elnafinn

Dear Arna

I had noticed that you have not been on the forum of late. You write so movingly and eloquently and it brought tears to my eyes. Your words leap out of your message and are hardhitting and raw. It is so extra poignant when you mention your anguish about perhaps not being able to have a child. It is also very touching to read about your husband too and clearly outlines the pain for the other person in the relationship who is so powerless to help they person they love so much.

I do hope that it helped you to write down your feelings and sequence of events, dear Arna. Keep talking to your dear husband and to us. You have such a lot going on at this time. Tomorrow is another day and I sincerely hope that things begin to get more tolerable for you soon.

Love
Elna x

km89

Hi,

I remember when my rheumy was telling me about one of the anti-TNF drugs, I think it was enbrel or something, anyway, she said it would be good for me because you can stay on it up until 32 weeks into pregnancy.
It doesn't interfere with cells dividing and multiplying, unlike methotrexate which is cytotoxic. I think the general consensus from data about enbrel is that it's ok to have during pregnancy but are often reluctant to allow it as there haven't been enough studies carried out. Ah well!
But I think it's an option to talk about with your doctor if you're concerned that the high steroid dose is proving a problem.
Sorry if I've droned on a bit but it caught my eye about coming off the meds to start a family, and it jogged my memory!
Getting everything off your chest always helps. I sometimes write down what I'm feeling when everything is getting too much and it usually helps. Hope you're feeling better

Katie

frogmorton

Oh Arna

I have bawled my eyes out all teh way through this one

((((((())))) for you and l am so so so so sorry

Three tissues later and l can reply finally.

Even if you dont want replies

Life is shift big-style sometimes. I think that your hubby hAS to go with you to rheumy and you need to rant there once and for all a major rant.

You clearly broke through your husband's 'armour' to see how much he really DOES feel for you and how sad he too is and angry and frustrated. Well done for doing that hopefully you two have a better understanding now of how each other feels.

I do think the issue of if you two can have a baby must be investigated as a matter of urgency. You need to know what your options are so the two of you can make decisions and honesty is needed here too.

Arna...l wish l had the answer....but not having it at least you DO knwo you can safely rant here and we do care about you.

Love and hugs and more hugs and a box of tissues

Toni xx

stickywicket

Oh Arna,

You are in a really bad place right now, aren't you? I really feel for you and for your poor husband who arthritis is affecting in a different way. I'm so glad you felt able to write it all down. Better out than in as my old Mum used to say. Getting it all down doesn't take it away but sometimes it can clarify things in one's own head and, at least, you will now know how much and how many people on here sympathise.

You seem to have been through so much in a short time. That's hard enough for those who start out in the best of health. When you start out in terrible pain and exhausted every extra thing that goes wrong becomes unbearable.

I know it's easy to say (and much, much harder to do) but try not to look too far ahead and assume that the worst will happen. New treatments come out all the time. Surgery gets better and easier. Life with arthritis can be good but it's impossible to see that when all one can feel is pain.

I do hope you will be able to get some help from your appointment next week. Why not print off your post and show your rheumatologist exactly how things are right now. The more they know, the better they can help.

Be kind to yourself. Keep talking to your husband. And do keep talking to us on here. We do care.

chris7

Dear Arna

I know you didn't ask for replies and in truth what can we add to that, but just wanted to acknowledge your very moving and heartfelt post and hope that things improve for you both soon. I know you will take care of each other as best you can and I hope there is some comfort in that.
bless you both
love
Chris

skezier

Hi Arna,

I have been wondering where you had got to. So sorry to read all this and understand your frustration and hurt. I was unable to have children and its a huge hurt for a while but flower it does honestly get easier and you never actually can be sure.

I can't say anything to help or make you feel better but just wanted to leave you a ((((( )))))and I am so sorry things have got so horrible for you.

Use this thread to rant and say whats in side, it needs to come out and maybe it will mean you are less pressured in side. I so wish I knew some magic words Arna but will be here if you need. Another ((((( ))))) and love Cris xx

tillytop

Hi Arna

I too cried when I read your post because your anguish and frustration come through so vividly in your words.

I can't add anything to what has already been said, but I am thinking of you.

Lots love Tilly xxx

Dottydoodah

I have deleted and rewritten my reply 3 time as i couldnt find the right thing to say. None of it felt appropriate so I will just offer a big hug xxxx.

carola

Arna

Thank you for posting your thoughts on here. Like many others on here no doubt, I feel oh so similar so often and you communicated this so well and clearly.

Someone else suggested printing off your post and giving to Rheumy. I think that is a brilliant idea as I firmly believe that when Rheumys understand the impact our illness and medications have on our life as a whole then only then will we have the chance of receiving effective treatment.

I too am preparing to get pregant therefore scrutinizing meds.

Arna, by reading the content of your post I see alot of positivity and strength reading between the lines and I just know that you and your husband are going to be smiling sooner rather than later.

Good luck with your Rheumy appt. and keep smiling.
Carol

stickywicket

Gickygawky, there isn't a 'right thing to say'. There's only how you think and feel and how much of that you want to put up on the forum. No judgements. Sometimes it's very difficult to know how we think and feel because there's so much going on physically and emotionally everything gets all 'muxed ip'.

Just post when you want to and as much or as little as you want to. We'll be here.

gickygawky

My heartfelt thanks to all who have taken the time to reply to my rant - I am truly, truly grateful for your support and words of wisdom.

I have had a few days to cool of now and things are a bit more tolerable than last week. I felt as if I was going to explode.

Hubby was up in the highlands for a four day stag over the weekend so I took the opportunity to go down to Brighton for a few days with a friend to get away from it all and regroup. It seems to have done the trick and I can feel the sun on my face again.

I have found the past few months have been difficult for one reason or another.

In January I went back home to Oz for six weeks to help my mother. She has bipolar disorder which has been very difficult to manage, was in a terrible state and contemplating suicide. Since the last time I was home early last year she had moved house three times and was in a very bad situation that would be too lengthy to even begin to describe. In a nutshell she wasn't taking care of herself at all and had spent every dollar she had ever earned on gambling. As there is nobody else to help and she has no friends, family etc, I made the decision to find rented retirement accomodation for her so that she has support around her, a safe environment to live in and the companionship of people of a similar age. My husband and I had to pay for everything and also tie up any other debts she had accroued which caused a great deal of stress for us as he has seen how badly she has treated me and was reluctant to help her. It was a terreible time and heartbreaking to see her in such a state and make that decision on her behalf however now that her medication is in balance again she has told me how happy she is so I am relieved and feel less weight on my shoulders.

While I was in Oz I received a call from my Dr who said I needed to come home to the Uk and get treated for an abnormal cervical screen. I decided to delay it until my mum was settled and had the treatment the day after I arrived back here. It went well but was extensive as I had treatment for CIN 3. Unfortunately the recovery from this has been marred by all sorts of complications which have only just been put to rest. The whole time it was going on I kept questioning the part Mtx played in all this and why have I not had problems until I started taking it. I know it's probably just the luck of the drawer but...

Since the beginning of the year I have been having tests through my GP regarding my fertility and ability to bear a child, all of which have come back requiring further tests and more head scratching as my system gaily goes about doing it's own thing and making it's own rules as it goes. Frustratingly we have also learnt that my husbands 'little men' don't swim. So it seems that the past year of being off my heavy drugs and the months leading up to and preparing for this to happen have been a complete waste of time.

Anyway onwards and upwards so they say. I have many things to be thankful for in my life and it is these things that usually allows me to view my life through my rose tinted glasses.

I feel better for putting my thoughts out there in cyber space and again I thank you all for putting up with my ramblings.

I hope you are all feeling okay on this fine and sunny day. I am trying to find the energy to stay up and enjoy the morning but after a sleepless night my bed has finally started calling. I would much rather sit outside and watch the birds

Arna xxx

skezier

Hi Arna,

I am glad you popped in and also that you had some time away. Sometimes we do have to regroup and things are better after we have done that.

I know its hard Arna but you mustn't make your mum's problems your problem... if that makes sense? We talked about this before and you might remember my mother was also bipolar with paranoid psychitzophrenic tendencies. Her sister also maintained she was unpleasant and well either she was or her illnesses made her so.

That said it sounds like your mum is more sensible and a nicer lady and its good to know she is doing ok at the moment.

I am sorry you are having such a hard time and would IVF help? Its a hard thing to go through and it isn't always successful but I just wondered if it could help?

Arna just hang in there and this lot are always going to be here fr you. leaving a ((((( ))))) and so many hopes for you and your oh. Cris xx

dreamdaisy

gicky, you have had a deal of stuff with which to contend, it's no wonder you exploded as you did. I did the same to Mr DD, many years ago (November 2003) in the middle of Southwold, and I recently confessed to him that I don't tell him anywhere near enough of how I am feeling, or am or am not coping, simply because I don't want to burden him with a problem for which there is no solution. Men like solutions and arthritis don't have none. He told me to talk more and he would try to listen better.

We all need channels of communication, we need to keep them open or deivse ways of alerting the other that a conversation needs to happen. I know there is nothing Mr DD can do or say but that doesn't mean that I should keep him in the dark - I thought it did and I was wrong. Talk to Mr Gicky, and I hope he can talk to you in return. It isn't just us that fight this ghastliness, it's our partners/husbands/other family members too. I wish you both well. DD

theresa4

Oh Arna
you go on and shout it all out I know I can empathise with everything you said my hubby and kids used to get it all the time. I know how you feel losing the opportunity to follow your career, And having a bi polar mum isnt easy either mine has had it for 20 years now with psychosis and secondary alcoholism and as I am the only coping child she has (I have a needy psychotic **tch sister and laid back hideway 200 miles away brother) I have had to care for her while bringing up my 4 kids, running a business with my hubby and voluntary work for kids with behavioural difficulties, then arthur moved in in Jan 2006 and my life stopped moving bit by bit and was stripped away.
My mum is still ill so I still care for her but not in the same way as I just cant physically be running around to find her hospitalise her go to all the CPA appointments as well as deal with ME I used to feel so guilty but now I realise I just havent got that to give anymore so occasional twangs of guilt now but I do my best.
If you ever want to talk please feel free to PM me Im hopelss at following the threads on here as I cant always concentrate on the reading I dont come on as often as Id like.

Take care
Theresa xx