After 2 years of being diagnosed with ra and quite an up and downy ride with it, I've been thinking a lot about how its changed my life of late. One of the biggest changes is that I spend a lot more of my time feeling guilty nowadays.
I've always been a bit of a perfectionist - I'm a consultant psychologist, I used to run a difficult unit, I enjoy doing nice things for my friends and my lovely husband and I like living in a nice house. until I developed the ra, I juggled all those balls with only the occasional fumble. Nowadays I feel like I'm juggling with one hand behind my back and I keep dropping those balls. I still work, I still try to do nice things for people and I still try to stay on top of my home but I'm running to catch up. I cancel on Friends far too often, have a back garden that's more of a nature reserve and spend far too much time in work apologising for time off, etc.
I know I need to adjust my standards, I know my friends are understanding and I know the cats love the new playground out the back but I haven't yet learned to adjust to the sense of guilt that accompanies every apology for canceling or the sense of failure that accompanies noticing the dust bunnies under my bed. I just wonder if other people have experienced other similar issues with adjusting - I think we're all aware of the physical adjustments but I'm not sure anyone prepares us at the point of diagnoses for the mental adjustments we might need to make.
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thenortherngal
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Hi there you need a big pat on the back for everything you do. It's about accepting the changes in our life styles...and me personally finds that very hard to Do...I've battled with RA for four years now...and still waiting further tests...tried almost every dmard with horrendous side effects and off all meds at present until further test are done...I go back to the years where I was once a fit healthy person..enjoying family life with my hubby two sons and friends and now I find it very hard to do this..I can't plan anything as I feel I let people down and then makes me depressed...we take the good days with the bad...I gave up work a few years ago...every day rolls into one now. I have a very supportive family. Can't imagine life without them but I also feel very bitter about feeling poorly and it's not fare for anyone of us. I try to take each day at a time. Live in hope. But your not alone and trying to juggle things around...is hard...and I don't think people understand what we go through...unless they are walking in our shoes...I know if they were in mine...shoes for a day...they would soon give me them back..hehe....I try to stay positive but we are only human....wish you luck...and hope you find a balance...but it's not easy...big hugs nicolaX
You have my sympathy too - I know what you mean about staying positive. I'm naturally a huge optimist and can usually see the positive side in most things. Some times that does me a disservice though as the fact I'm generally up beat means that people don't notice that I still struggle with lots of things and therefore don't perhaps cut me the slack I need - reinforcing the guilt further. It's not so much the people who know me well, it's more the colleagues who make the occasional comment about me being off again or the neighbours who put a rude note through the door complaining that my front lawn hasnt been cut in four weeks (they've moved now thank goodness) that can cut. Silly Iknowto be upset by them but human I guess
Where to begin??? Well, to start with I admire you continuing in such a demanding position & in my simplistic mind you'd do worse than sit opposite your professional self & spill as you have here!
All you've said simply doesn't matter though I do appreciate it's hard to accept when you know you so do care.
Guilt isn't your friend it's your enemy so treat it that way - it's something so difficult to cope with until you step back & evaluate why these feelings come on. I also have a home I'm no longer proud of but it gets cleaned as & when I can do it, it's just not spick & span all the time like it was before RD.
Genuine friends will understand that you sometimes aren't well enough or too shattered to always be there but they'll be there for you when needed or are on the better side of grim. Those who don't understand don't matter. That can be difficult to accept but those who consider you the same person but who now has life changing condition are the ones who get you can't always be the life & soul all the time anymore. When I'm out my friends I can't stand with them for long now so suggest we find somewhere to sit or excuse myself & find a seat close by. I'm never alone for long as truth be told many would prefer to sit too!!
Your cats must love you for how your garden is as present but if it really upsets you maybe think of having it redesigned. It can be done quite reasonably & ours is now full of planters so basically no weeding & a lot of it is raised which makes it so much easier. We've no grass anymore but with 3 dogs that was just hard work keeping it presentable anyway!
Pack those juggling balls away & bring them out on the better days.
Thanks for the support people I shall find a nice corner for my juggling balls to be tucked away in
My life's changed a fair bit since my PsA diagnosis. On one level I'm the ideal character type to cope because I've always lacked ambition, in the conventional sense, anyway. What I mean by this is that the competition, the 'greasy pole' at work always irritated me and, in my opinion, got in the way of the whole team doing a genuinely good job. Similarly perhaps, I've always felt that the nagging self-consciousness about how my house looked got in the way of actually enjoying my home.
PsA hit me so hard that continuing to work or to keep up appearances was well-nigh impossible for many months. What was odd though was that in between feeling too low to care I discovered a new zest for life because I realised that having change forced upon me wasn't entirely bad and definitely had intriguing possibilities. Gradually I've started developing new skills and a new life in many respects. I'm now well enough to socialise more, to keep my garden in some sort of shape and so on. But these days everything's subject to the acid test of whether I really want to do it. There are still some things that have to be done whether I want to or not of course & then I just try to be a big, brave girl with mixed results!
Of course a summary inevitably makes the changes I've made sound easy, which is misleading. However there is a lot to be said for re-evaluating, with or without RD. That's what I like about it .... changes need not be coloured entirely by the disease because sometimes, if we give it some thought, change can be desirable in itself. There's a modern obsession with appearing to be successful etc. and much to be said for questioning that.
With your skill set I'd imagine you could re-invent your life to a certain extent and still achieve a great deal without pushing yourself to the limit. How about getting a cleaner, a gardener etc.? How about doing the same type of work in a different context, a context that involves more sitting down, or less paperwork or less of anything that's not essential? If you have a partner, how does he or she really feel about the high standards you've set yourself? Just mentioning that because my husband perceives some of the changes I've made as a re-emergence of the woman he met many years ago - my high-energy career never really did anything for him apart from top up the bank balance but I was too busy to notice. I may be fooling myself of course, he's probably secretly planning to run off with a CEO of some highly successful company! That'd teach me for 'preaching'!
Hi I can totally agree with your post, I work as a homecarer for the elderly and this morning whilst at work it was if lightbulb came on. I realised that I struggled to wash and dress myself this morning so why was I on my knees in pain doing it for someone else. I called in sick to work and have spent the rest of the day consumed with guilt. So I can relate to your post. I am trying to come to terms with the fact I just can't do as much as I want to and its incredibly difficult for me to accept. Your post really a struck a cord with me as the guilt is part of ra for me as well. It's hard trying to do everything housework work kids and social life. I have teenagers who try to help and I have, a supportive hubby and family so I'm lucky in that respect. I have,to fess up I have dust bunnies under the bed and you could write your name in the dust on the telly !!!!!! Glad to know I'm not the only one who feels this way at times as well.
I do guilt brilliantly nowadays!
My guilty feelings are;
1. About my family and the fact that I am now lying in bed while my two younger teenage sons and husband are preparing to pack up the car for middle son's return to uni early tomorrow. I should be helping but I can't face it. I'm too tired to carry things up and down stairs but I know I'm missing out.
2. About feeling low even though my RD seems to have absented itself despite being off all RD drugs presently. But in fairness to myself it has been replaced by severe peripheral neuropathy which I find even more depressing than my old RD ever was. I'm mobile but my gait isn't good because I can't always feel where my feet are landing when I walk - and they are full of odd sensations and I'm tired all the time from higher doses of Amitriptyline, insomnia and incessant fatigue.
3. About not being able to tolerate drugs which have worked so well for my RA/RD. I feel I'm betraying my body and my family - although in fairness these might not be the drugs that I actually need just now but I just wish I was like many others who seem to cope with them relatively well.
4. About my work and the fact that I now find it so hard to be properly engaged in it, let alone earn my keep from it. Also that my husband gets so tired working as a contracted night care worker in order to pay the bills.
Thanks for providing me with somewhere to ramble and get this off my chest thenortherngal.
Twitchy
• in reply to
PS Re gardening - I found this post from Lupus UK's HU a few months ago very cheering. It isn't "community only" so I think/ hope it's okay to post it on here. healthunlocked.com/lupusuk/...
I too have always set myself high standards with striving for a nice home and have worked hard in my role as a detective in child abuse. I've Recently been diagnosed with ankolysing spondilitis and also osteoarthritis in my hands and knees.
I have found the fatigue totally wipes me out! I am currently off work due to very high pain levels in my back and buttock area and fatigue which makes getting up and showered a mammoth task which takes me ages. I struggle to do much at all.
I feel so so guilty about not being at work, guilty for not being able to keep the house spotless and guilty for never wanting to go anywhere any more.
My partner of 10 years has really stepped up (I have always been the indestructible one who never ever gives up or needs help!) and is very supportive.
I know I put too much pressure on myself even now but can't seem to change my ways! I guess I don't want to lose out to the condition or feel it's taking me over.
The other night I shouted at my partner just because she wanted me to dye her hair and I was too exhausted but she really wanted it done. I never ever raise my voice I'm just not like that so its really got to me and I'm worried that maybe I'm not actually dealing with all this as well as I would like everyone to think!
Do I need to address the mental effects of having this diagnosis I find myself wondering?
I'm in a similar boat to you really, and as a professional I'm quite hard on myself. Being diagnosed with a life changing illness makes us go through a process of grief and guilt is definitely part of that! I'm a huge advocate for the need to address the psychological effects of our illnesses, it is overlooked a lot I feel. Ask your GP about CBT and pacing techniques as some people find these very useful, I know some of the arthritis charities offer courses locally on living with arthritis/chronic pain? But can't think which ones. I'm sure someone will chime in!
I don't feel as much guilt anymore. I've lowered my expectations, first off. I feel like it's important to not be so hard on myself because it's not like I'd rather let people down, ignore my kids or cancel dates with friends. I've come to realise that my husband is more than willing to help if I ask him. My 5 year old understands when the "bugs" are hurting mommy more than usual (ie a flare), and we either find something we can do together, like read a book, or he'll find something else to do. My 3 year old understands ths less, but he's getting there. On better days, I make sure to play actively with them. After constantly feeling guilty about having a hard time getting to work on time in the mornings, due to fatigue or morning stiffness, or difficulty managing locks, I finally sat down with my manager and explained IN GREAT DETAIL what I am gng through. Now I am working from home 4 days per week and, while I have committed to going into the office every Tuesday, they have shown tremendous understanding that some Tuesdays might not be good days for me, because of this disease, and some weeks, it might not be a Tuesday that they see me. Being true to yourself and others about what you have is a powerful thing. And it only brings greater understanding and compassion from others - and don't we always complain that no one understands what we're going through? I've only had RA for 3 years now, but I think it's important to remind myself that this is chronic and degenerative, so if I have good days, I need to appreciate them, and not use them as a chance to catch up on chores or paperwork at the office. Life is fleeting.
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