Another Side Effect of Methotrexate

[Tniemiec]

Ok, so here is another side effect of the methotrexate.  When I inject on Friday night, I most always go down for a day or two.  My wife complains that she has no life now.  She says her weekends are shot, and she has to go out alone.  She complains that I do not remember things, or I am not listening.  It's all true.  I inject on Friday night so that I get sick on the weekend not during the week.  My wife loves to party, and go out with friends, and most of the time she has to do it without me.  Does anyone else feel a little foggy I'm the head  from the methotrexate?  Does anyone else have a similar spousal issue.

[Crusee]

Apologies in advance for long response.......

Yes I had the same side effects as you when I had mtx jabs.Fuzzy head,bad memory and not listening,and yes I admit that sometimes I had selective hearing as it was often easier to be like that.This is a very potent drug with a lot of side effects and everybody seems to experience different things.Any concerns get in touch with rheumy nurse and hopefully they can allay your fears.

As for your spouse issue-this is a difficult one.

Have you heard the expression arthritis doesn't kill you but it takes your life?

Well it certainly does.Not just yours but everyone around you especially spouses/partners.It will be just as difficult for your wife to come to terms with your disease as you are ,perhaps even more so.Whilst you are experiencing the effects of the disease and the drugs first hand you are in a position to understand just how poorly you are feeling,but your wife is standing on the side lines watching this going on in front of her (nothing she can do to change it) and often there are no outward signs of your condition that she can relate to.This is not easy for her.

I have to say that I don't have issues with my spouse but I consider myself one of the lucky ones.I am not in any way suggesting that your wife is less caring so please don't think that.RA is a life changing event for both of you and will take some adjusting  to in order to make everyday life do-able. This condition means that there will be a lot of sacrifices and compromises to be made by both of you.

You say you take your jab on a Friday is this to fit the couple of sick days in at the weekend in order not to interfere with your work schedule ?If so this is what I did.Trying to hold down a responsible demanding job in the best of health was challenging enough but feeling the way I did after the jabs was a complete no- no so I chose to feel the effects over the weekend.Saturday was always the worst day for me and I never intentionally planned anything for a Saturday but there were times I couldn't avoid it and so I either tried to make the best of it or just didn't go.There were times when my husband really wanted to do something and I just could not face it.I felt guilty and said if he wanted to go without me then I didn't want to stop him enjoying himself but he always stayed and looked after me.I knew just how disappointed he felt after looking forward to something and then we didn't do it. He reminded me of our wedding vows "in sickness and in health,""for better or worse " you know the ones ,but it's always me that's sick and me that's the worse.

I don't know you're situation but are you able to change the day of your jab so you can enjoy one day of the weekend together to do the things you like?If it means you are poorly on a Monday can you work from home that day or do flexi time,does your job role allow for that?

My husband has read a lot of the literature I have been given by doctors and hospitals etc and comes with me to my appointments so he understands what is going on with my condition and how it and the drugs affect me so he knows what to expect,and I think it goes a way to his appreciation of RA.

However,your health is a priority to you and there will be times when you need to put yourself first so don't feel guilty.If you are the main breadwinner of the family and you have  made the decision to feel ill at the weekends,then you have acted responsibly and put your family and financial commitments first by ensuring you provide for them by keeping a job.If you didn't work or even worked only part time would your wife have an income to keep you both?

You need to have a long conversation together to sort your priorities and needs and above all agree on a plan to suit you both.Like I said there will,be a lot of sacrifice and compromise for this to work and a chronic disease such as this will certainly put pressure on any relationship and sometimes test it to the limit.

I really hope you can both sort this in a way that gives you both what you want and what you need.

Crusee

XX

[Mandalou in reply to Crusee]

May I just say Crusee IMHO what a nice well written and thoughtful response to Tniemiec

Mx

[Crusee in reply to Mandalou]

Thank you Mandalou nice of you to say so.

I hope they can work out something to suit them both.

Crusee

XX

[Ina1 in reply to Crusee]

I am from South Africa and has  Aggressive chronic RA for 31 years. I think Crusee gave you a good advice.  I was married, had two children, a full time

job, did art work and do gardening, being a deacon in church and even studied part time. One feel that the RA is a death sentence, but it can be managed.  Yes methotrexate make you sick, but if you have nausea take something for it to lessen the problem for that day. I also take a good dose of Essentiale to clean my liver and regenerate the cells monthly for a couple of days. Then I take good headache medication and 2 Menograine tablets for that day. I also take extra vitamins to help for the forgetfulness like Concentration pluss. Yes you are going to feel for the worse, but this will help you get through those met. days. I took mine on a week day, and that day I did the less important work, like filling etc. That give me the weekend to spent with my husband who worked away from home and I could attend my kids sport days or academic meetings. I like to be in control, do everything  self but had to let go bit by bit and take help from either my family members or friends. That was not easy, but remember you own it to your self AND your family to live the best you could on your condition. I hope that it would help you and your wife. Regards. InaM

[flow4]

I don't have a partner but I definitely crash after taking MTX, and I also really want to enjoy a bit of social life myself. I work, and I'm a single parent, and have been for a long time... I think 'burn out' has contributed to my illness, so I now take the view that allowing myself some pleasure and relaxation is a crucial part of managing my health, and keeping myself as well as possible. I have found that Thursday is the best night to take my MTX: I'm usually fine (or just a bit nauseous) until Friday afternoon - but most people are 'slow' on Friday afternoons, even if they don't take MTX! Then I crash, and Friday night is lost, and so is some of Saturday... But I'm usually recovered enough to do something on Saturday evening and Sunday. Might that pattern work for you too? 

It might also be worth considering reducing your hours at work, if you can afford it...

[bassiefromholland]

Similar reactions. I now inject myself on monday, than I have two bad days, extreme tiredness on wednesday and thursday, but in the weekend I feel some better. I am lucky my wife doesn't complain about it,mthough it must be tough for her too!

Wish you alk the best!

[PFKAAde]

Wow - firstly I'd like to say that Crusee's response is some of the soundest advice you will get and I'm not sure I can add much to it, other than to recount my own experience as a male with a wife. 

Secondly with regards to the MTX side effects, yes it can cause all of the symptoms you describe. And the disease itself can cause some of them. There are lots of threads on here with practical advice on managing these side effects, or from people like myself who were lucky enough to get off it and still find a treatment plan that is effective. For me that is Humira, currently on its own apart from diclofenac, lansoprazole and calcium, but it took me a long time to get totally off the prednisolone - I was on a maintenance dose for years. 

However for me it didn't matter what I did, MTX ruined my life. To give some context, when I first went on MTX the nausea etc was a price worth paying as the RA was so severe I had episodes where, for example my wife (girlfriend at the time) was working away and I woke up in the middle of the night desperate for a drink of water (had obviously forgotten when I went to bed). It took me 2 hours to get from our bedroom to the kitchen (we lived in a flat) because I couldn't walk. I had to lie on my back and push myself along, slowly and in agony. I got to the kitchen, pulled myself upright and couldn't turn on the tap or open a bottle. I'm not ashamed in the slightest to say I cried like a baby that night. Compared to that a little sickness was nothing. 

However moving on a year or two the RA was much better controlled, I was taking MTX subcutaneously by then to try to reduce some of the side effects, and I was sick, not just feeling but physically sick for 5 days of the week. Didn't matter when I took it, it made work and play almost impossible (I was an IT consultant). My memory was (and still is) embarrassingly bad. I literally can't remember some things that happen a week ago. In a fairly mentally demanding job this is a nightmare. I couldn't remember conversations I'd had days before. I forgot so many things it's scary. It all adds to the pressure and the stress. 

My social life went from being rather full-on prior to the disease to non-existent. Even though the disease was better controlled it was still a nightmare. And on top of that I felt sick all of the time. I took it on a Monday, because we didn't have children at the time I took the view that I wanted to keep my partner more than I cared about my job, which was becoming increasingly difficult. 

Somehow during this period I got married. If my wife had known then what she knows now, I'm not sure that would have been the case. The build up to the wedding was, in itself rather stressful but the day itself was the happiest of my life. We went on honeymoon and when I returned I went back to work. By then my job had changed as the company I worked for was acquired by a large, American global IT Services company. My line manager had always been hugely understanding and never put any extra pressure on me. My attendance was sporadic, but even this was not causing an issue until we got taken over and my line manager changed. 

I went to see my new boss one day to explain how difficult I was finding things and to cut a long story short he was a ****.  I remember returning to my desk almost in tears before packing up some things and going straight to see my at the time GP. I got signed off for 2 weeks and put on anti-depressants. This was 13 years ago, I have never returned. 

My (now) wife has been both fantastic and terrible. As Crusee says, it is extremely difficult for your partner. They watch as the person they love becomes a shadow of their former self. They are totally and utterly powerless to prevent it. They do not understand what we go through, and how can they?  Most days you look ok even when you feel terrible inside. 

I have had swollen joints that have felt fine and joints with no visible inflammation that are agony (we all know the pain). How can somebody possibly understand that? 

My wife has watched while I have had both my hips replaced and one knee replaced and been totally powerless to help or understand. She has watched her 'man' cry like a baby. She has watched our social life go from every single weekend, full-on (I was 27 when we met and a bit of a party animal) to almost nothing. And it has been damn hard for her. And me.

I have been depressed for large periods of our marriage, and that in itself can be a relationship ending condition. Why are you so depressed when we are married? Is it me? These kinds of things are difficult.  And of course if you are depressed / chronically ill and somebody starts talking about how it affects them, you think 'I can't believe she's moaning about her life, what about mine!?!'  But of course it does affect them, because they care. 

To be fair to my wife, she isn't my mum. She isn't my doctor, nurse or carer - and didn't marry me to become one. 

We now have 2 (beautiful 😀) children, and that adds a whole new level of pain. I had to come off (and there goes my memory again) whatever it was I was on at the time when we were trying to conceive.  I then spent the first 2 years of my son's life battling with flare ups and depression. So my wife has a baby, a depressed, sick husband and a full-time demanding job to cope with. When I put it like that it's a miracle we are still together. Particularly when number 2 came along a little sooner than expected. Two children under 3 years old. 😱

To be fair to me this time, I have looked after the children while my wife has pursued her career. She now has a very senior finance role, meaning she works very long hours. I have, until a year ago, been the main carer. I consider myself lucky that I have had the opportunity to spend so much time with my children.  I have got to know them in a way that I would otherwise never have been able. They are now my life. Along with my wife. 

It hasn't been easy, and still isn't. We have had our ups and downs. A lot of downs. But we have made it this far (14 years in August), and if we have survived the things we have been through so far I have high hopes for the future. My wife has learnt that there are things I cannot do, and that it is not me being lazy or difficult. 

From time to time we fall out, as any married couple do, and then sometimes things get said that hurt. But you have to remember that these are things said in the heat of the moment. Sometimes purely because they hurt. Let's be honest. 

So the thing to do is to talk about things before they become an argument. Don't let things fester or they get more and more significant. And don't take everything to heart. 

It's difficult, there's no getting away from that. It takes effort and it takes more than 'just' love. You have to decide what is important, both financially but also personally. We are lucky in that I have always been paid and my wife has a very senior job. Money is not one of our problems. This has meant that I have been able to virtually give up my job. Not what everyone wants, and I have to say it isn't great socially, or from a personal 'growth' point of view, but I now have my children and they are my world. 

We don't have a 'standard' family in terms of who does what, but most of the time it works for us. My wife doesn't expect things that she used to and I don't beat myself up if I can't, for example, take the kids to the park. They have grown up knowing daddy has his limitations, but that love is not bound by physical constraints. They are more understanding and less judgemental than some of their peers. 

And I love all 3 of them more than anything else in the world. 

So apologies for the length of the post, and that it isn't all about MTX, but it isn't all about MTX. The issues you describe will exist regardless of the medication you are on at the time.  But it is still possible to remain married, live a full, demanding and rewarding life, and have a chronic illness. Not ideal, but doable. At times it feels like there is no escape, and that you don't know what to do next. At times it gets you down. 

But overall I don't think I would be any happier or closer to my family if I was up doing triathlons before breakfast. In a lot of ways it has made me a better person. More understanding and compassionate. More grateful for what I do have, rather than mourning what I don't. 

I hope I haven't sent you to sleep or given you any extra worries. It's not 'that' bad. 

Good luck in your journey - you will need a little from time to time. 

Ade

[smithfield in reply to PFKAAde]

A well thought through and helpful reply same as Crusee.

You right it not all about the MTX I was on it for a while but it made me so ill I had to stop taking it. My  RA is uncontrolled at the moment while waiting for funding approval for biologics.

I try to be more spontaneous now if I can do it I will but if I plan something the chances are the pain will hit harder than usual and I have to cancel. My husband is not an outgoing animal, but it must be. difficult for partners who are and see plans dashed but that I am afraid is the nature of the beast. As for myself I have learnt to be honest with others about the pain and the limitations it imposes, so I do not beat myself up when yet again I cancel.

[flow4 in reply to PFKAAde]

Thank you for such an honest, compassionate and thoughtful post, Ade. I really appreciate your insight.

[Hidden in reply to PFKAAde]

Hello. Your post was really moving. In fact everyone's post is. I am wife of a poorly man. Very recent. Very traumatic. At Xmas hubby was a fit strong man. Only 3months later he's in pain all the time. I do all the basic caring tasks for him. We have money worries. Hubby only getting SSP each week. My 3days a week job suddenly became main source of income. I am now about to lose my job!! Lol. I am 59 and hubby 61. Worked all our lives for this!! I digress. My point is that sometimes we have had the most awful slanging matches. We always say sorry to each other. It's not the person it's the situation. Equally I feel a closeness growing we never had before as hubby always worked away. It's as hard being a spouse having to witness someone you love in such pain. To see his body wasting away. To see how the simplest of tasks is almost impossible for him 😞 RA does indeed screw up everyone's lives. My best thoughts to one and all out there xxx

[GabriRoma in reply to PFKAAde]

I know this is an old post and there is a good chance you won't read this but I must ask: how can you be so positive?

I have PSA which isn't anywhere near as life changing as RA and it has isolated me from everyone and everything. I don't see friends due to fatigue mostly but as in an attempt to avoid alcohol. Every activity in life has become a chore. Keeping a job to take care of myself feels like a marathon everyday. Neither my partner nor family understand because I look completely fine. Often doctors other than my RA don't believe me when I tell them my diagnosis. It feels like the disease has taken everything enjoyable and positive from my life... I don't understand how you can find a bright side...

[PFKAAde in reply to GabriRoma]

Hi GabriRoma

It’s interesting reading posts from a couple of years ago - things change and just because I was feeling relatively positive when I wrote this, I can assure you that’s not always the case.

I know how you feel and it’s not a good place to be. But everything is transient. Things don’t continue for ever and I always feel that when things are really bad I just kind of switch off, go into ‘autopilot’ and get on with it for the childrens’ sakes. Then at some point I look back and think phew, glad that’s over.

Relationships are tough at the best of times, including (or maybe particularly) marriage. There are good and bad times, and many in between. As I said above it’s hard for people to understand and it’s hard for them to know what to do. I imagine most partners of folks with a chronic condition feel a range of emotions, and they won’t always come across ‘as is’. For example they may be angry about what is happening to you or they may be angry about how it affects their lives yet feel guilty for thinking that. This can come out as anger against us, which it isn’t always meant to. They may be in denial that this is happening to their wife / husband and come across as not believing or caring, whereas really they just can’t get their head around events and need time (and maybe help) to process these thoughts and emotions. They may feel a whole range of emotions and they may not know how to accurately show how they are feeling and they may feel out of control - this is happening and I’m powerless to help the one I love. Difficult for all concerned.

I must admit to having a wry smile when I see people getting frustrated about having an ‘invisible disability’, because after the events of the last few years I can now say, in all honesty, I would rather have an invisible disability than a visible one. Having to deal with changes to your body that are highly visible to others is incredibly difficult and I’d rather people weren’t sure how bad things are than look at you with pity in their eyes because they can see for themselves how bad things are.

So maybe you are in a bad place at the moment, but maybe that will pass and things will seem better. Maybe your PsA isn’t well controlled and this will also change over time with a different medication or approach. It took the best part of 10 years for me to find a treatment regime that truly worked and didn’t leave me feeling dreadful for 5-7 days of the week, I certainly wasn’t positive through a lot of that. But these days I’m in remission and that makes a huge difference. Or at least would if other stuff hadn’t happened to mess things up.

But yes, I know what you mean. Sometimes it feels hopeless and that life will never be the same - learning how to accept your new reality and move on with your life is something that we all have to do, but only some of us ever manage. I’m not implying that I am at that stage, but I am aware of the process involved, and that it isn’t a linear path - just when you think you’ve accepted things another flare, or a med stops working, or something else comes along to throw a spanner in the works. And all we can do is pick ourselves back up and go again.

I wonder have you told your GP or Rheumatologist that you are finding some things difficult? They may be able to offer some help, even a talking therapy type thing can help you to make some sense of things, and the longer you leave it the more it will affect you - at least that’s what I have found. It may be that you are depressed and that is why things feel so bad. I went to a GP a couple of years after I first became ill with a sore jaw thinking it was a part of the RA and left with a referral to a CPN and some antidepressants. Turned out the reason my jaw hurt was because I was grinding my teeth in my sleep and, with hindsight I was depressed - just didn’t recognise it for what it was as it had never happened to me before that. I wish I had received more support back then, because ultimately I was put on medication, the CPN discharged me and warned me ‘not to go down that path’ because of the stigma attached to mental health (yes, a health professional said that) and I was left to fend for myself.

All the best

Ade

[GabriRoma in reply to PFKAAde]

Dear Ade,

Thanks for replying. It's interesting that you should mention the jaw grinding because my partner recently told me that I grind while I sleep as well. It often leaves me with headaches in the morning that I had previously assumed were connected to poor sleep and dehydration. My partner has suggested several times that I talk with a therapist/psychologist but the pragmatic side of me thinks that the time and money would be put to better use in PT or something of the sort. I suppose talking to someone could how though considering I'm very much alone in dealing with the constant pain (even when it's subtle it's still quiet draining).

Ultimately I have to fake being healthy all day at work, with friends, and especially when I visit family. My family remembers me as being healthy, young and very active (running several miles a day and always on the go), and when I visit them, I find that unless I get VERY serious (almost mean), I'm pushed into participating in activities that I haven't got the energy for. They'll say "Don't worry I'll carry you. Come on just come with", even after I've said no decisively. All this to say that my partner sees my faking for everyone and when it's just him and I, I turn into a brain-dead zombie.

I find that when I approach my Rheumatologist about it, she sees that on paper things aren't getting worse and is very hesitant to give me anything strong for the pain. I'm taking MTX and Humira but just Tylenol for daily aches. Sometimes it seems like ever she doesn't believe that my pain can get as bad as it does.

Essentially, as you described, I feel like I am fending for myself.

Thanks again for your help!

[PFKAAde in reply to GabriRoma]

No worries. I do recognise a lot of what you say - particularly the being almost mean to get across to people that you feel like ****. Problem with this approach is that people come to think of you as being moody / angry / argumentative etc and it can become a vicious circle. I think learning how to say no, politely, firmly and with conviction would be great, if only I could. Personally I find myself wanting to scream ‘I’d love to do (whatever it is) but I can’t!’. But I try not to.

I’m thinking the PT side of things and the therapy side of things are not mutually exclusive and would probably both benefit you enormously. I can certainly vouch for any physical activity that you can manage as being good for the body and soul.

Your partner suggesting you get some therapy may be a sign that he is concerned for you and knows you are suffering? Also could be an opportunity for them to come along and learn something about how you really feel? Not everyone would be ok with that, but I suspect it would be pretty useful.

If finances are the issue then there should be support available through the good old NHS (assuming you are UK based although not sure as you said Tylenol). That said it doesn’t cost that much (about £60 per session in UK for most types of councillor) and I have come to the conclusion that money is far less important than health, happiness and relationships. Even if it does cost a few pounds it may well be a good investment long-term. That’s not to say that therapy is some kind of silver bullet, but it may help you to make sense of how you are feeling, and how to process those feelings and hopefully - ultimately - move on with your life with some new coping strategies.

🙏🏻

[GabriRoma in reply to PFKAAde]

Hi again,

You're totally right about how to approach people when explaining that I can't come along. I suppose I'm still accepting the fact that I have a "disability" (how scary...). Sometimes I'll pretend I'm totally healthy and go running, or drink too much with friends, and needless to say, I get a rude wake-up call a few days later realizing I've put quite a toll on my body.

My partner definitely notices that I'm struggling with the mental part of it almost more than the physical part. Renouncing old lifestyles and activities, and he has very much reduced his social life as well because I'm often not up for late nights, or activities that involve drinking. I think he would be very willing to come to a session with me.

BTW I keep mentioning the alcohol because I am living in Italy and the main social events are Aperitivos and of course lots of wine!

I definitely agree that health far outweighs the financial commitment but I definitely notice the extra burden. I already work 4 days a week as the 5th day I pretty much dedicate to methotrexate recovery, doctors visits, resting, and driving 45 minutes to get the humira (Italy has a rule that the Humira must be picked up from the same hospital where your Rheumatologist works, but its free!) But, many things like PT, therapy, etc aren't covered by the insurance and as I've got tendonitis in my wrist and arm and am I drum teacher, my extra weekly medical expense has kind of been dedicated to that.

What type of physical activities do you do that help your body feel better? I've been doing water sports (swimming and aqua gym) but sometimes the kicking in swimming ends of leaving me in a bit of extra pain.

It's really helpful talking to something with experience in the subject by the way so thank you!

-Gabriella

[PFKAAde in reply to GabriRoma]

Regarding physical activity I see a personal trainer (or go to the gym on my own and do the same stuff) as I have had some pretty serious back problems - long story but I woke up one morning after a period of sciatic pain and couldn’t move my legs. 6 months, 2 surgeries, 6 nerve root block injections and 8 slipped discs later I desperately needed to regain lost muscle and improve my balance as much as I could.

So I started seeing a PT and doing a 10 minute cardio warm up (cross trainer / treadmill / static bike) followed by a mixture of resistance and weight training to target specific muscle groups.

Although the main goal was improving balance and regaining muscle it has helped in so many ways. For example my right shoulder is damaged from early in my RA ‘career’ and cannot be repaired according to a shoulder surgeon due to the nature of the damage. So I have put up with it for 15 years or so, couldn’t sleep on that side and have very limited mobility. Since starting weights the pain has improved considerably, I can now sleep on that side again and get a lot less pain.

So all in all well worth it for me.

[Mabeljane]

Ade

I read your post and it made me realise that you need to put yourself first

I work as a nanny. It's becoming more and more difficult due to my balance and pain issued. Not helped by a fractured ankle that didn't heal well and means that I can't walk up and down stairs "normally" my husband also has RA so understands the problems. Financially it will be hard. My kids are grown so no worries there. Thank you for your lovely and articulate post

[PFKAAde in reply to Mabeljane]

You're very welcome. Yes, I agree. Sometimes you have to be selfish in order to have any kind of life. And we none of us are robots, if you have no enjoyment or pleasure in life then what is there apart from pain?  And if pain is all you have in life, you're no use to anyone....

I have a long-term friend that also suffers with an inflammatory arthritis and we both get a lot out of talking to each other about stuff. We often say we're the only people we know that fully understands what the other is going through. It helps to have an outlet. IMHO. 

All the best. 

Ade

[Karen77]

When I was first diagnosed, I found a website (not sure which one) where a doctor counselled that many people feel brain fogged/ill the first couple of days after taking their MTX. he suggested taking MTX on Fridays so you can feel like crap on the weekend but be right spiffy for  work again on Monday. I read that and thought, screw that! I'd rather feel like crap at work and enjoy my weekends! I took MTX on Sundays when I was on it. But I also didn't notice any change in functioning after taking it. 

I guess you need to sort out what works best for you and your situation, but your wife could also be more patient and understanding too.

[Tniemiec]

Thank you all.  I so appreciate all of the advice.  I am amazed that you all took the time to respond in such detail.  

[Crusee in reply to Tniemiec]

Oh sorry forgot to mention I have been stopped from mtx jabs in last 5 months as they caused me another serious medical problem but I am not sorry I don't have them any longer as they made me feel so ill.Is there another alternative that your Rheumy could offer you and then the 2 days of sickness etc wouldn't present such a problem?

My days of being a party animal are long gone but at least I can now put in an appearance.

All the best.

Crusee

XX

[Crusee]

You are welcome Tniemiec.Its not going to be easy for you both but hopefully with some changes in your life and changes in both your expectations you will both be able to have a happy fulfilling life together.I wish you both the very best of luck,and you need that conversation sooner rather than later as Ade says if left things can fester and get blown out of all proportion.

Thoughts are with you both.

Crusee

XX

[Witness1]

We've had to learn so much with this disease haven't we? So much wisdom in the posts above. Just keep empathising with your partner Tniemiec and telling her what's going on for you. Keep listening to her even though some of what she says may be difficult to hear - but jettison some of that guilt! You are not your RA.

[lornaisobel]

I have read all the replies you have to your post.  I take Orencia as well as methotrexate and find the Orencia makes feel as though Ive go a dreadful hangover combined with exhaustion for a couple of days so like you I inject Orencia before my days off work - the side effects from the Methotrexate I just put up with ( I cant have both injections on the same day) As for my husband I'm sorry to say he offers no support at all - he tells me that now Ive got RA I'm useless, a failure and makes it absolutely clear that he has no intentions of looking after me or helping me in any way.  He goes out quite a lot and never asks if I would like to go - I have no idea where he goes or who he goes with.. he is quite aggressive and a bully - I think he recognises that I'm quite vulnerable and takes advantage of my condition.  I phoned NRAS for help and was told that this behaviour from a spouse/partner happens - its not common but happens.  They told me that they had  one man on the phone saying his wife use to continually say that she wished he was dead.  Its suppose to be a reaction to not being able to cope with sickness etc ?? Its not a solution to you and your wifes difficulties but it often helps to know you are not alone living with someone who doesn't want to know. I have like you posted my problems on this site - everyone is kind but I feel if  its something you haven't experienced its almost impossible to understand.

All I can offer is for you to find something in life that you enjoy doing and are able to do so you don't have to rely on someone else for emotional and practical support

Take care and good luck Ill be thinking of you

[PFKAAde in reply to lornaisobel]

Iornaisobel

It's difficult to know how to respond to this. I have had times, I'm not going to lie, when I have literally felt like I hated my wife (and I'm certain she has felt the same). That sounds awful, and when I read your post it makes me realise how lucky I've been. But there have been times when I have been in bed feeling like I have the flu, not the man variety 😀 but full-on flu - and my wife hasn't even brought me my meds or a drink. At times like that you feel so alone and that your partner couldn't care less. But looking back they were times when we really weren't getting on very well, partly due to my unreasonable behaviour if I'm honest, but partly due to the difficulties posed by being so poorly and not being able to help with anything at all. 

Sometimes I think for a partner who has never experienced anything worse than the odd bout of tonsillitis, and particularly for one that likes to be able to control things, the lack of ability to effect things leads to a sense of denial. If I ignore it it will go away. He'll get up and stop being difficult. That kind of thing. 

i often think back to when I too was invincible 😬 I'd never had anything worse than a cold before the flu-like illness that preceded (and triggered?) RA. How would I have reacted if my partner had been the one that got ill? I can't answer that question because it didn't happen  I like to think I would have looked after them, for life if necessary. But without actually being there it's very difficult to say.

What if I had started looking after them and then met someone else? Or fallen out of love? A sense of duty is one thing, but to spend your entire life looking after someone you don't love, or maybe even like; I think this could lead to a sense of resentment, and maybe manifest itself in the negative behaviour patterns described above. 

Let's face it, as much as we like to think our motives aren't always selfish - is that actually the case? For example, do we care for people for their sake alone, or do we get some kind of 'pay back'? Maybe a heightened sense of self-worth, the increased likelihood of our genes surviving (in our children's case), or even the feeling that someone loves us, needs us, relies on us? I'm not medically trained, I don't know the answers to these questions.

I truly feel for you though, it must be crushingly lonely and thoroughly depressing. I wonder was he always thus to an extent, or is this something that has happened since you became ill? If the latter, and it's not typical behaviour then is it anger at the lack of control and the prospect of his wife being chronically ill? You don't say how long you have been ill, but it sounds relatively recent? If he has alway been OK prior to this then maybe there is hope and once he had got his head around the situation he may stop being such a, hmm, pain. If he's always been a bully, well - you always have a choice no matter how poorly you feel. And no matter how much you don't want to hear it.

I really wish there was something I could say to help. We are all learning about human nature, and it's sometimes not pretty.

I wish you all the best for the future.

Ade