Sorry I've not been about for a few days. We changed our broadband from BT to Sky and BT cut the line on Friday when they should have left it going until today!
I'm feeling really out of sorts at the moment. The normal really positive me seems to have disappeared and left a tearful wreck in her place. I'm waiting to start on Cimzia after failing on Enbrel and then an unsuccessful attempt on Humira so that is probably not helping. I feel constantly fluey and completely knackered. I think I may be in the early stages of the menopause so that doensn't help either.
R is spending long hours in the new office and I'm alone at home for most of the day. Even when he is here, he's working so I still hardly see him. I know he's working hard trying to make a success of his new venture and I hate myself when I get short with him but he and I used to work together from home until he started this new business with his family and now I'm so lonely - and bored! The boys are all out virtually all the time and who can blame them. I'm not exactly much fun being around at the moment. Probably why R is steering clear as well!
The house is a tip - constantly. I just look around and want to cry. R and the boys do their best but with the best will in the world, their idea of housework is shoving everything in a cupboard so you can't see it! Even when they load the dishwasher, I end up having to wash it all by hand because they don't load it properly so it doesn't wash. - and don't get me started on the bathroom! I don't want a spotless house but reasonably clean would be nice. I don't think they really truly understand just how hard it is for me. I know it's partly my fault as I always put on a brave face. Neither my family nor R's know just how bad it can be sometimes and I absolutely hate asking for help.
My beloved dog Tag died last September and R went out and bought me a puppy the very next day. I love her to bits but she's such hard work. When she was 8 months old, the RSPCA rang us and asked us to take on another one who was being abused. We couldn't turn her away and a temporary arrangement has turned into a permanent one. They are adorable and I love them so much but it's like having toddlers in the house again. On top of that, because there's now two of them I can't walk them anymore and I really miss that. Tag and I used to walk along the seafront and sit for a while looking out to sea. Because she was old, she was happy to amble along beside me. These two go at 100 miles an hour!
Last night, as I drifted off to sleep, I actually hoped that I wouldn't wake up. How awful is that? My kids would be devastated but I'm just so very very tired....
Sorry to ramble on. Thanks for listening. It helps just knowing that there's someone to listen to my rantings.
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bub124
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Hello, your blog was like you had an eye on my life, it's identical !
I too have had days where I despair and wonder if I will ever feel well again. Even sitting up right as proved impossible! I went on Cimza and at first it worked really well and I had no side effects which was a huge bonus. Sadly it didn't Work forever and the effects wore off after a year. however it has worked successfully for a lot if people and they have continued success.
I have just had to leave my job which I was heart broken about, I was so depressed that I too couldn't see the light at the end of the tunnel.
I went for counselling and she said what I was feeling was loss, loss of a job, loss of my independence and loss of the choices.
It's like a bereavement that we go through. It will get better, as you get you medication sorted and you get stronger it will lift. However in the meantime let your rheumy nurse or dr know just how bad things are for you.
Keep talking we are all here for you. Takecare x
Omg bub, how can any of us help,! I feel truly helpless. Depression on a grand scale seems to hit most of us at some time. From experience after stopping on Dmard or biologic , find waiting for the next, seems to cause depression and flares (certainly in my case) .
A number of years ago when I was particularly low and diisabled, waiting for knee and hip surgery, never getting out the house and sleeping 90% of my time, my rheumatology nurse, suggested trying an anti-depressant, and at that time , the thought of giving in like that seemed horrendous, but she explained to me that thinking of the anti- depressant as a third crutch, sort of hit home. Even my GP thought it was a very good explanation! So here I am about 7 years on taking 20mg citalopram daily. It has lightened my load so much, and just takes the edge of the daily grind of JCA. I am not suggesting this would be right for you, but it's my experience. Please keep writing to us here, as it may sort of help, indeed , just helping others too, is a great comfort. My love and best wishes.jennyxx
I did speak to my nurse and it was him who suggested I came on here. Admittedly, I probably didn't let on just how desolate I feel at the moment.
I've always worked in some way or another. Even in the past 10 years when I've been forced onto incap, I've kept my hand in helping out R with the business (you know the sort of thing, accounts, letter writing) and what I miss more than anything else is talking to him about our hopes and dreams for the business. His family is REALLY close. When we first agreed to start the new business I was supposed to be involved as well but it soon became clear that I was surplus to requirements. Everything I suggested was sidelined, all the research I did was dismissed. In the end, I had to take a step away as R and I were arguing about it. Now, he spends his evenings texting his sister and his dad (co-directors) and we hardly speak. Doesn't help I know that I bite his head off but I can't make him see we're in a vicious circle. What topped it off the other day was his Mum turning up here and accusing me of "not being committed" because I never go to meetings etc. Well, I would if I knew when they were!
R has always worked from home so that he could be there for me when I have bad days but now I feel that I've been abandoned. Even on bad days, he still goes off to the office when he could access all his files etc from home. Don't get me wrong, he's an amazing man and puts up with all sorts but I can't make him see just how awful I feel about everything.
Bub your mother in law is totally off, what a pain. You are very patient and kind on behalf of your husband. He sounds as though he is a good but busy man and is enjoying a new challenge and in the excitement of everything has temporarily forgot that he is needed at home as well.
I can empathise a little and know how dismal our outlook can be when it takes every bit of your energy to get up out of bed never mind lift a few things up. I had to get a cleaner to help with the housework, i felt guilty at not doing what i normally did and like your family, they did a bit but it was not good enough and i am not houseproud. My husband and i have always been really independant of each other, and like most mothers I did a full time job outside of the home and within it and looked after the children and made sure his family and mine got helped out and visited and they got their presents and cards on time and I kept up contact with friends. that worked really well til i got ill. He is quite helpful but i find it so hard to ask for anything and feel i am nagging if i complain. The only thing that gives me hope is the many people on here who do get medicated correctly and their lives return to some sort of normal. It would be a shame if you continued to sleep and the next week everything kicked in and you had your life back......
I suppose I've been a bit unfair to my mother in law. she doesn't really mean anything by it. they are good, kind people but just very over the top when it comes to their kids (38, 39 and 42!!). The business was set up to help R's sister who has been unwell with depression and they felt it woud give her something to do. We already had a business but agreed to put it all into one pot. Since doing so, we've been earning next to nothing (literally!) whilst it builds up and it has put serious financial strain on us. On top of that, everything I've always done (adminstration etc) is what his sister does and so they've given her it all to do, hence why I was quickly redundant.
After I had words with his mum the other day, R suggested I write her a letter which I did, trying to explain how I felt. She was very sweet when she replied but I still don't think she truly understood how I feel. She just likened everything I said in my letter to things that had happened in her life - no illness just the usual financial woes of running your own business - and so far as how I feel is concerned, that's the menopause, which is probably true to a point but not completely.
I just feel that they think I'm being selfish. The fact that I need R at home some of the time. As we all know, no-one can truly understand unless they've experienced this enemy within!!
i understand Bub. i feel sometimes that my family think i am being uncaring and selfish when i don't go home for over 3 weeks to see my mother but it is a long drive and my excuses feel just like that - excuses - i love being with them, they are good fun and kind but they just do not understand that the drive completely wrecks me and that it is more than a bit of pain.
My husband doesn't make any real allowances for me but does offer a sympathetic nod in my direction now and again and constantly says i do too much but if i don't do it who will. (that sounds really pathetic, he just doesn't know how to handle it if i am not in control of everything)
You are in a difficult situation with the financial thing as well, you have sacrificed a lot to help with your sister in law.
You are not being selfish, you want to be included in the new business and you want to see your husband, that is not a lot to ask.
R is just the same. I know he cares but like you say if I don't do it who will? Xx
Your Hubbies family sound a bit harsh, and sounds to me me that perhaps they don't realise what their actions are having on you. Families close knit families can be very difficult to join even after years. Please do fee
Able to have a chat anytime. Jennyxxx
I been thinking how trite my last message,was. If talking can make things any better, I am always here. I do so hope you and hubby, can get together and have a heart to heart. Jennyx
Ps. Citalopram is a prettygood anti-depressant, see what your GP thinksx
Hi Bub - I can't add much to what others have said. I really feel for you. I work as an artist with my husband and presently I'm finding it really hard going - can't concentrate like I used to and feel unfocused and like I'm in crisis. But really I'm not because mostly the MTX and Hydroxy have worked wonders over the past 7 months and I'm fit and far healthier than I was this time last year. But it's not just coming to terms with the pain is it? It's the uncertainty that RA brings with it and the fears and general rollercoaster of it all? I think you are just going to have to tackle R but telling him you need to speak to him on your own when the boys are in bed and you have his undivided attention. And really tell him how you are feeling straight down the line. He may get a shock and will hopefully be able to see how this new venture is affecting you and how damaging his mother's attitude is.
I'm very relieved that we live too far away from my in-laws to have more than the odd phone call because if my husband ever had to work with them it would end in tears very fast. Even family weddings have ended in heart break and estrangements so it's a tricky area he's entered into from your point of view. He needs to know how it's making you feel - if you don't explain it candidly then you can't expect him to adjust and adapt to include you again. So please speak to him about it all and describe how isolating it all is.
Meanwhile we are all here for you - a great big hug to you from me too. Tilda xxxx
Oh Bub,
My heart goes out to you.
A messy house seems such a minor thing to people who don't understand the effort it takes to keep it nice and the despair you feel when you are not well enough to do it.
Our environment becomes so important to us when we have to spend so much time in it.
I fully understand the dog dillema. I am looking after my daughter's 8 month old Northern Inuit x German Shepherd until she can find suitable accommodation. She comes over most days to walk her but on some days isn't able to manage it and as you said, it is like having a giant hyperactive toddler in the house who can jump up, rampage and move a lot faster that you can. I am totally exhausted and my daughter doesn't seem able to acknowleddge it. Thank goodness for my sister's though who can offer a safe haven to visit every now an then. (although I nearly didn't make it this time).
My daughter has an emotional disorder which makes it difficult for her to cope at my home so we manage the best we can but like you, I have days when I wish it was all over.
Please go and see you GP and see if you can be referred for counselling. Talking on this site and a counseller will give you the chance to sound off when you need to and maybe sort out some ways of lightening your load when it all gets too much.
When you are so used to doing and now can't(but want to)
Not sure if it will help or not but my occupational health Dr suggested I sign up for the expert patient programme. The next one in my area starts next year but I can start online next week. Going to give it a go.
I want a tidy house but it takes so much effort just getting the hoover out these days. I don't think my OH really understands how I feel.(sometimes get the feeling he just thinks I am lazy)
As others have said 'we are all here for you' and we understand.
It's good that you can say how bad you're feeling, even if it's only to us. This is a horrible lonely disease, so as others have said do see if GP could refer you for some counselling as well as anti-D's. There was an article in the papers today about how much difference there is between postcodes, with some still managing to refer people. So do ask. But do keep sharing with us too.
It really sounds to me that you've had a whole heap of tough things to deal with, not just the disease but the social/emotional side effects too. So don't be too hard on yourself. Re the housework, my compromise is to concentrate on having a small area of cleanliness and calm where I can sit and relax. A bit like blinkers on a horse, if I can't see it then the mess isn't there.
But please believe that life won't always be like this for you. The puppies are going to grow up and be devoted and calm companions, you'll get started on your new drugs and the pain/exhaustion will get better, and the business will get sorted so R can give you some attention and afford a few treats. Take care. Pollyx
Can't add any more than what has already been said. Life is always worth living, it just sometimes this friggin disease can make you feel so down with the pain, fatigue and sheer frustration of not being able to do what you use to.
I too hate a dirty house especially when I am feel unwell. My youngest child room is a real tip and I can't just walk in and pick things up like how I use to. Alas I just shut the room door and moan at him when he comes home from school like tonite. It's now and he won't do it again until saturday.
My heartful best wishes go out to you and I hope your mood picks up soon,
Bless, may I first say thank you that you took the trouble to comment on my blog when you quite clearly have plenty on your plate already. Pretty much all of the points have been pretty much covered, really think anti-depressants have developed in the 7yrs so its possible that another one would be a better fit for you. Like others on here have said we have pretty much all had days where not waking up is appealing, followed swiftly by the guilt of such a thought, try not to be too hard on yourself. Hope they manage to get a better handle on your meds as we all know that having control of the RA is often half the battle and once you have a handle on it most things dont seem nearly so bad. I am regularly in awe of the members of this site and how in spite of it all they keep going, we are all allowed a wobble now and then, may yours be temporary...feel better Linda xx
Is there any way you could get to go out regularly with your man just to share something which is just you? We sometimes put a wee picnic together and nip out for an hour. My inlaws have created problems between us for many years, they don't acknowledge my illness ( or any others apart from their own) but they don't live very near. They don't really accept me and I've stopped trying. But sharing even small things with my husband helps - he's a bit of a wirkaholic too. Hope things improve for you it doesn't sound easy
Hi, I'm quite newly diagnosed, was put on MTX but taken off twice due to low blood counts. I have found this more emotionally painful rather than physical painful. My Mum has gone into over-drive, offering to do everything for me, so I get cross with her for treating me like a "cripple". My boyfriend has stuck his head in the sand, and doesn't really like to talk about it. My 18 year old daughter just carries on as normal!!!!! I joined this web site and I joined a support group because I feel I can't really talk to my nearest and dearest, it's the best thing I did. A lady told me at the support group "I shouldn't expect people to understand, the only people who will understand are the people with RA" and I think she hit the nail on the head?! A few weeks ago things go too much for me emotionally, so I took a Friday off work and just drove to the seaside for the weekend, just to try and sort my head out. I am now on anti-depressants, but we can't let this desease beat us. I don't live with it, it lives with me and fits in around what I want (I know that's not quite true, but that's I tell myself) I hope you start to feel abit better soon, take care and, I know it's hard, try to think positive.
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however it has worked successfully for a lot if people and they have continued success. 
Does anyone have fibromyalgia with their RA? I have been so tired I just sleep almost all day.
Tired,in pain no end in sight.
