Acceptance?

thenunn

Keith said 'Now I'm committed to staying as fit & as healthy as possible through the right medication, diet & positive thinking. My body may have other ideas about all of this but I'm extremely determined to not be defined by an illness.' I totally agree. We all have bad woe is me days/times..but if we stay there i believe we make things worse. The hardest part for me is accepting I cannot do work,well not the regular type.Or be as physical as I was and that has taken some getting used to. However I think I'm there,mostly . For me the way forward was remembering there are others in this world far far worse off ,and that at some point most people will have to go through similar ..for me those have been great levellers .
Loosing my best friend/husband/partner very suddenly last year ,made me realise ,all we really have is now,so get on with enjoying life and be grateful..I'd tried many times in the past to live in the now,but often failed,with What happened with Paul ,I accept that truth.
Take it easy ,be your own best friend and look after your whole self,

stickywicket

Well said, thenunn! Now that's what I call acceptance

fulton

Being from a boxing background, I found it really hard to come to terms with being diagnosed with Ostreoarthritis in my left foot. At my lowest point I was in so much pain constantly I felt like ending it all, but I had and operation to sort that out and it did have some success, but since then ive been informed that I have RA in both feet and im also getting pain in my hands. I also find it fustrating witht the lack of understanding with people in general. I did find this group very helpful and the support was overwhelming.
I have started dieting with Slimming World and managed to loose 4st since last September and im looking forward to finding exersizes that wont effect my arthritis. I have also read that bodybuilding can help slow down the arthritis! I dont know if its true but im gonna give that ago!

stickywicket

fulton wrote:

I have started dieting with Slimming World and managed to loose 4st since last September and im looking forward to finding exersizes that wont effect my arthritis. I have also read that bodybuilding can help slow down the arthritis! I dont know if its true but im gonna give that ago!

Well done, fulton! That's terrific weight loss.

I don't know about body building but maybe you'll find something helpful in here on the exercise front http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Healthylifestyle

HannahT

I try to maintain an overall healthy lifestyle, but as you all know it is tough. I think most of the time it is your mental attitude towards healthy living that really determines if you stick to your weight loss plan.

I came across a very interesting statistic for 'every pound of body weight it puts an additional 4 pounds of pressure on knees'. So, your BMI really does affect arthritic and joint pain. It does make perfect sense. But, I never realised how much weight my joints really had to cope with. Makes me really re-think that 3rd and 4th biscuit!

debram

Having had physio based on pilates and hydrotherapy for my Psa-it's really helping.
Two months ago I'd never have believed I would get in a pool but I'm doing it to help myself keep mobile.
I'm not saying it's pain free during or after but as the water supports your body it's the easiest way to stay mobile!

Bonnielinda

A most informative thread! Have been reading through and have found a lot of comments which have some meaning to my situation. I guess many others have felt the same too.

I too am travelling down this road called acceptance. It has been a long hard slog getting here, but hey-ho, here I am .....

I'm starting to take control by getting back out there and living my life again. I really do feel that it is working:)

Airwave!

Bonnielinda, I like your attitude! Its obviously helping you, you are more than arther.

Sarahd1609

I'm new to this forum, but am finding it really useful. I am in the process of being fully diagnosed. So far they have said it is reactive arthritis, osteoporosis, tenosynovitis and hyper mobility. I am a 30 year old mum of a 5 year old and feel like I'm letting him down as I can't run after him and do some things he wants to do because of pain. I also work full time in a bank. I don't think I've fully accepted my condition yet as I still try to carry on as normal and feel angry when I can't do something. I suffer with severe lack of sleep due to my legs throbbing all night. I am on Methotrexate injections. If anyone has any coping techniques to help with pain I'd be very grateful xxxx

stickywicket

Hello Sarah and a warm welcome to the forum though I'm sorry you had to find us. You sound to have quite a lot on your plate there and a full time job too.

Right now I've just found your post as my tablet is running out of juice so I'll keep it brief. Be gentle with yourself. You aren't superwoman and you can't do everything. Your little boy needs your presence and love and I'm sure he has it. You won't be able to do all you want with him but you can do other things. I know because I had RA for 7 or 8 years before my elder son was born and I have 2 grandsons aged 4 and 7.

Pain is inevitable but there are techniques that can help. Have a look through the Publications and Resources (top right of the page) What medication are you taking for pain?

I'll be back tomorrow, I promise. Meanwhile you'll get more replies if you copy this to a new thread though things are always a bit quiet over abwnk Holidays.

stickywicket

Hello again and a Happy Easter.

Right, the good news is that, even if the diagnosis changes, it sounds as if they are sure you have something auto-immune going on so the methotrexate will probably stay, as it's used to treat all sorts of auto-immune forms of arthritis. Many people are on here a long time with only vague diagnoses but that doesn't alter anything. These things are best dealt with asap.

I don't wonder that you're finding it hard to get your head round everything. It is a lot to deal with at a young age so, as I said before, be patient with yourself and accept that some things must change. Indeed, the more adaptable you are, the easier you will find things. I was never houseproud but I do remember deciding, when my two were little, that something had to give. I could have a tidy, relatively clean house and three very unhappy, nagged occupants (husband and sons) or I could settle for a bit less. I opted for the latter and have never regretted it.

Try this publication for 'coping-with-pain' techniques. http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Managingpain . I wonder, do you take anything at night to help with those throbbing legs? I've never done strong pain relief as, especially when my two were young, I wanted to be alert enough to help if needed but a relatively mild 'painkiller' (We often call them 'painduller' on here, for obvious reasons) might help.

Sarahd1609

Thanks for the reply. I hope you had a good Easter. Thank you for your kind words. I guess when my hubby says I'm not superwoman I take it that he's only saying it to make me feel better but to hear someone who actually understands what it's like to be in pain constantly it hits home more. I'm slowly coming to terms with it now I think. I've sat down with my son and explained that sometimes mummy is in pain and can't do the long walks he wants to but on mummy's good days, we'll do as much fun stuff as we can, to which he replied that's ok mummy on your bad days well do art and craft and gave extra cuddles. By reading other peoples posts, I'm beginning to realise I'm not as bad as some so am going to be more positive and turn any back days into days where I can be more productive with my tapestry that I enjoy doing and let the housework wait for a good day. Xxxx

Bonnielinda

Good for you Sarah, you are heading in the right direction. Keep up the positive attitude and I really do believe it will make all the difference to your overall well being.

Nicnac

Hi Lynn,
I'm with you I'm in the shoe dilemma now. But the good news at 40 I now have the excuse to go back to my student days and wear Dr Martens. Even better then, I thought I was pretty funky with my green lace-ups. But this time I've got ones with this season floral theme on them, roses . Obcourse I need to wear them in. My next problem is which ones to choose next, the choice is far beyond what it was 20 odd years ago. It gave my rheumy a laugh. And if all else fails back to my faithful Fitflops.
Take Care and happy hunting for that magic pair of comfy shoes. Nic.

daffy2

Sarah I think your son's response to your explanation holds the key to the way forward, in that he could see equally enjoyable, just different, things to do on your down days. Thinking positive is not always achievable(especially if like me you tend naturally towards the pessimistic end of the spectrum !) but avoiding dwelling on what can't be done, living in the moment, appreciating little bits of serendipity - your child's smile, a flower, a kindness from a stranger - make things more bearable. Doing tapestry instead of housework on bad days is an excellent plan - the results of your effort will certainly last longer!

Bonnielinda

Sorry I am gonna go a wee bit off topic here, but I am on the the same boat as most of the ladies. Shoes, shoes, shoes all my pretty shoes! They sit on there racks gathering dust and reminding me of my 'carefree' days I even had DH design and build a custom made shoe cabinet to store my collection a couple of years ago. So, back on topic, will donating these objects that represent my past life be a form of acceptance? I wonder ..... or a sign that I am ready to move on and get on with my new life. I'd like to think it's the latter choice. But, I am not ready to do it just yet. So, will keep peering into the cabinet often and wonder when will I truly be able to get rid of them all and use the space more constructively!

Slosh

Reading this thread with a lot of interest as I'm now realising thst much of what I thought was acceptance was actually denial. I have OA in my neck but it has caused muscle weakness in my left leg and ankle I too have had to put away my heels and was glad to see I was not the only one who cannot bear to get rid of them. I was diagnosed in July last year and kept gping at work on educed hours until January when I was sent home on health and safety grounds, I was still working despite my GP saying I was not fit. When I was told to go home I sobbed because I had tried so hard to keep going to the extent that many colleagues did not realise how hard I found it at times.

I'm now recovering from surgery and am just realising that it was not the cure all I had convinced myself it would be.
On the whole I come across as positive, and use humour but that's often because I'm scared to do otherwise in case I go to pieces.

I am lucky in that my employer is supportive but do feel anxious about the future, but I'm angriest about having to give up hobbies thst meant a lot. I have had to give up sewing and patchwork and I'm trying to adapt to using mixed media instead and I'm also not dure if I will be able to start singing again as I have post op throat difficulties.

I was talking to a work friend last night who gave me some real words of wisdom, saying that I need to be kind to myself and use my time on sick leave to work on adapting how I do things and learning how to manage this.

So pleased I joined this forum

dreamdaisy

There is a difference between denial and acceptance.

Denial: 'This isn't affecting me, I will keep going regardless and eventually life will return to normal.'

Acceptance: 'Right, this is affecting me, it's going to take time to for me to understand, I will learn to listen more to my body and this thing will live with me on my terms.'

(I learned the underlined bit from Stickywicket.) DD

Slosh

Wise words Dream daisy. I'm realising now that what I saw as acceptance was denial, it was the only way I could think of coping. Thonking about it I have dealt with problems in my life the same way before just trying to keep things "normal". I have in the past taken this to such extremes that it resulted in a breakdown.
People see me as strong, but really it's about fear.
What I have realised is that I am in the early stages of working to acceptance as I only got my diagnosis last July and until I had surgery in February hopeful that it would resolve the problem.
I realise now I have to be both gentle and honest with myself, and take my time to work through this process step by step.

stickywicket

You've struck a chord there, Slosh. I come from a very funny family (take it how you will, it'll be right ) and I think I'm inclined to use humour as a weapon to keep people at bay. I have no problem with that. Some people will ask how you are but out of politeness and the last thing they want is the truth :roll: so I save the latter for one or two good friends who I know do care and can take it.

We all need an outlet so bottling it up indefinitely is not good but I'm sure I read somewhere that people who face a bad diagnosis square on and those who deny it tend to cope better than those who just fall apart. (Well, reading it back I guess that's self-evident :roll: )

As for giving things up – adapt and survive is my motto. When I couldn't walk much any more I took up Riding for the Disabled. When my orthopaedic surgeon got nattered about his beautiful new revision I gave that up, bought a sort of mechanical horse exerciser machine and started going for 'wheelchair walks' in which I walked some and rode some. Don't look back. Always look forwards. (If your neck's as stiff as mine you'll have no option )

Slosh

Thank you.
I totally agree that most people who ask how you are, are just being polite. At work apart from the head and deputy there were just a few people who knew, hence the shock when I went on sick leave as the majority didn't realise how bad I was.

One of my favourite colleagues said that with my stick he thinks I am a Superhero in disguise, with the stick concealing my secret powers! Much preferred that to the colleague who said that in my super duper and expensive new office chair, head rest and all I looked like Steven Hawkings!

Looking forward it is, but once I start physio next week who knows.

I have made two positive steps towards acceptance though, joining this forum and ordering a new car with automatic transmission and rear parking sensors.

dreamdaisy

Welcome to your brave new world; for what it's worth I think you are doing OK because you are making the necessary changes that you need. A chronic condition causes us to re-think what matters and what can be cast aside (and the results of that can be shocking to others but they're not living with our reality). We know what it's like and it's not easy; are you in education and were the colleagues male? DD

Slosh

Yes I'm an assistant head with responsibility for Inclusion and special needs.
My head and deputy are both male and have been great, the colleague who referred to me as a superhero in disguise is male and used to fill my kettle for me each morning and take it to my office for me, he just adopted it as his job! The Steven Hawkings comment was from a female colleague, but as I'm her line manager I was able to get my revenge.
I find it isn't a case of saying men or women are more supportive, depends on the person.
Thanks for all you encouragement.

Hope38

Hi,

I am new to the forum but not new to Arthritis.
I am 38 and been diagnosed for about 9 years but up until recently have lived in denial.
I have had good and bad times over the years, more recently bad than good.
I always try really hard to be positive and as others use humour to hide what I am really feeling.

I am about to start Cimzia, my husband feels this is the answer and is really happy but I am reluctant and scared for the future.
I guess this is the first time I have to really face up to the fact I am not well (acceptance). I worry about the long term affects of this disease and the long list of medication I have taken.

I am sure in time I will accept it, as I wont be beaten. But in the mean time it will be good to talk to people who understand.

stickywicket

Hello Hope and welcome to our forum. It can be a lot to get one's head round and acceptance is, I believe, an ongoing thing. (We accept one rubbishy thing and then another rolls up :roll: ) Maybe you're being a bit hard on yourself. I don't think you can have lived in total denial because, if you're about to start cimzia, I presume you've been on DMARDS previously. That implies acceptance even if there are bits you are still juggling with.

Husbands? Yeah right I have a lovely one and have had him for 45 years, almost as long as I've had the RA, but he still sometimes surprises me by the depth of his lack of knowledge about RA It might be that yours genuinely believes 'this is the answer' or that he's being optimistic for your sake. If you yourself have always put on a brave face maybe he really doesn't know much about living with the disease. It's hard to keep our loved ones in the loop without making it into a noose round their necks. But I think it's essential to keep plugging away. We can be honest (“Stuff really hurts today. Can we have a take away?”) without being self-pitiful.

The future? No-one knows their future whether or not they have arthritis. I've had this for 53 years now. In that time I've acquired two new hips and three new knees but also a good husband, a degree, two loving sons and two gorgeous grandsons. I have had a fair bit of pain but also a load of fun and happiness. I hope you will too

By the way, if you start a new thread I'm sure more people will see it and want to welcome you. Not everyone notices these 'sticky threads' at the top of the page.)