As you prob know Ive had so many things like RA meds making me ill, a broken back, a month of diarreah and so on since October. Hubby has been a diamond having to do everything as I can still hardly walk much because of my hip affecting my right leg down to my foot. This morning he broke, he asked if I fancied a bacon & egg sandwich or on toast, I said toast please. He did us both sandwiches. I didn't mind at all but he cried, he said he wasn't coping with how ilI am, have been. He has always had low self esteem, from having 2 high flying elder brothers and always feels his best isn't good enough. I tell him it's not so, I tell him he's wonderful. But today it broke my heart to see him like this. His brothers hardly ever come over, yes they have their own lives but we're all retired, have plenty of time. Hubby ( and me for the past 10 years) always been there for them through cancers, looking after their kids when younger, getting in shopping when they've got COVID. I just want to scream at them. Most of my family have moved away. My sister who still lives nearby and her hubby have their own dire health problems but we talk nearly every day even if we can't get to see each other much. I feel useless most of the time. But to see him like this with no offers of help or even visits from his family is not on.Sorry I needed to vent. It hurts.
Off topic...when you're husband breaks down because h... - NRAS
Off topic...when you're husband breaks down because he isn't coping. 😪
Your husband sounds a gem.Sometimes we forget or put to the back of our minds how much chronic illnesses, like RA take from those round about us. Chronic illness just doesn't affect the person experiencing it, and because it is largely hidden people don't see it, don't understand in ways they understand cancer or Covid.
I feel that I am retreating away from people, some 'friends' mainly, who do not understand / expect too much of me. I was asked recently did I enjoy my walking holiday, yet the 'friend' saw me, no more than a couple of weeks ago struggling to get round the house. Our holiday was no walking holiday or anything like remotely like it. Another asked if I would like to join her to her favourite restaurant for lunch...a 120 mile round journey across wintery / icy B roads. We had just been talking about how difficult car journeys are for me, and how I struggle to drive to visit my mum.
Although I don't live with my long standing partner of 22 years, he is my rock and like your husband carries a lot of responsibility for me. He too gets quite stressed at times, all I can do is reassure him that I'm ok and love him and encourage him to take some time for himself. Having regular breaks and time out to do normal things away from me is so important.
Have you or your husband asked for a wee bit help ? Do your relatives understand how difficult living with RA is ?
My partner has the most awful cold, in his chest atm, he is coughing up green sputum. He looked gaunt when I saw him mid week...all I've had is a mild version, yet I'm so immunosuppressed (?🤷♀️).
I've had to persuade him to go to the pharmacy for a wee bit advice today before he visits me. I would not be surprised if they tell him to ring NHS 111.
I don't know what else to say.
Thank you Mmrr. One of my sister in law's mum had RA and died in her 50's. She totally gets what it's like yet when I couldn't go for Xmas dinner to them ( I sent my husband though for downtime from me) she texted me to say she would pop round to see me the following week, not heard from her since yet we've always got on very well. That hurts me & hubby I think. Hubby goes 2 football with his son when there's a home match. I think he's so lonely at times. For 4 weeks I've not been able to even sit in the living room with him as it hurts my leg so much to sit. I've tried lying on the sofa but it's just not comfortable. He comes and watches a couple of programs on TV in the bedroom with me but he prefers to sit on a chair as he has a back neck. Watching TV for me lying on my side isn't something I can do for a long time either. We've not asked for help from them because when we did see them way before Xmas in our house they didn't want to talk about how we were once they asked and we said it was very difficult at the moment.My sister does help when she can, she's a diamond and we're always here for each other. But I don't ask her much because of their health issues and having a mum in law with vascular dementia to cope with.
G is a total gem. He's just getting so upset about things and I worry as he has already had one heart attack. I've told him everything you've said. Ive told him he needs to relax more and not keep hoovering and stuff when it's not necessary. Hes always been the same, he wakes up and goes through a list of what he should do in the day. It's the way he is. We'll get through this bad time. I tell him it can only get better. I just needed to reach out to those who are in the same position. Thank you it's helped. 🌹🌹🌹
It's so difficult when illness affects both yourself and those around you. I look at my husband sometimes and feel so bad for how tired he looks. You try to do what you can and having just moved house there is such a lot. My poor hubby was so tired yesterday, he fell over last night and scraped his knees and hands on the kerb. I was more panicked than him, and had a feeling something had happened when he had gone out to get our tea from the chippy. It was dark and cold and I felt so sorry for him when he staggered through the door. Apart from that we'd dropped his brother back at his home after he'd been helping us, so he then had the long drive back home. He is a diamond.
P.s. sorry I was so upset I didn't wish you're other half the best and hope he gets better quickly. Tea today and Sunday lunch now ordered for delivery so be at least has no cooking to worry about all weekend. Xx
Not at all, the forum is worth it's weight in gold, just to write how you feel, and usually someone is a similar position, not feeling alone is so important.Hopefully this bad time passes soon for you both.
My partner has just left, usually he stays until evening, but he is just coughing continuously, he can hardly hold a conversation. The pharmacist said ring NHS 111, but he will wait until Monday and ring his GP (assuming he doesn't get worse).
I wish you both a reasonable weekend.
My heart goes out to you and you husband Haz and while I don't have any great pearls of wisdom to offer all I can say is by the sounds of it you have been more than supportive to others and it shouldn't be a 'one way street' especially at a time when you are in need of some support. If people say 'I'd love to help' very often you know there's a big 'but' on it's way followed by how hard it is for them or an excuse. As hard as it may be if you have always helped others it might be a time to take a step back and for you and your hubby to look after each other and put yourselves first. Granted not an easy step if you are of a caring nature, or family have relied upon you in the past, but this is now and time to focus on your situation. That's not to say you can't or wont help in the future if you feel able to, but your health and needs have changed and family/friends need to acknowledge and take this on board. Sending you both some supportive wishes and remember to take things one day at a time xx
Oh Pippy youve just reiterated exactly what I said to hubby about an hour ago. We have each other, we've done our bit (a lot actually)being there for others. Now we look after us. Yes if we're needed by them if we can we'll help it's our nature as you say. But my motto is now if it don't make you happy dump it. Haha a bit ironic really now I've typed it, RA you don't make me happy go away 😏 thank you so much for your support it's really appreciated.Ive treated us to having our tea delivered tonight and Sunday lunch delivered tomorrow so he at least has no cooking all weekend. I actually cannot wait to get back in my kitchen to cook, I never thought I'd say that!
He's under orders to sit and watch the grand Prix and football on TV today. No chores, except he insisted on stripping the bed and washing the sheets 🙄
Thank you again. 🌹🌹🌹
I'm so sorry you are having a tough time at the moment. And your husband sounds a gem. I'm so glad you have arranged to have two meals delivered, it really is a good help at these times. its the sort of thing I do when I need to, as my RA has caused quite a lot of damage, and I also have needed to let people go who weren't supportive as I don't have the energy to invite them over, listen to them and it not be returned when I've needed it. (I tried to explain to a very long standing friend what RA is and she just said 'oh that's what it is is it!' , and when last year I have to have two extractions of perfectly good teeth just with a very mild wobble because I've now got osteoporosis and need a drug for it, she just said 'what's that' in a dour voice, and regarding the extractions just said 'at least you've got a dentist'.
I love helping people and listening as you also do, and I'm sure once you are over this blip you will start to feel better. You are helping your husband by insisting he has his own time. My brother visits me and I'm always aware of what he does for me and that he doesn't overdo it.
Wishing you both a calm and happy weekend xx
Bless you sunnyweek! Thank you so much for replying. Like they say it's good to talk. my friends have basically stopped contact (except one my bestie and she lives a couple of hours away)because I can't do much anymore. But my best friend and I video call every week. I've got my head around the others by telling myself it's their loss. Ive helped them a lot in the past as well.He's looking forward to his treats of food delivered, although he says it's not what he meant, but I know that but it's something I can do for him.
Lots of people don't get our struggling others don't want to know or understand. I'm not the fun person who can meet up for breakfast at anytime now so they've moved on. At 64 I care but I get on with it. As long as hubby is ok that's what matters.
Have a calm and happy weekend too. 🌹🌹🌹
My hubby has depression and when it kicks in he hates the fact it causes so many knock on issues ie money and overall life.
Firstly I always call the GP and tell them and hubby knows I do this as he knows someone needs to get the ball rolling. When the GP calls back I do the low down of info and then he talks to my hubby so he does not have to do too much talking.
The other thing I managed by pure amazement is got him to talk to MIND and though his words 'felt a prat' being able to talk to someone who was not me or family helped.
Doing easy food and take outs to take any pressure off is fab too,
All you can do is love and support each other and maybe the odd walk in the garden for fresh air and slowly get thro this.
Big hugs x
Thanks Deeb as always 🌹 we will get through it. Once I get my leg sorted and RA meds sorted. Hip appointment is 21st so not long now and Rheumy nurse for new meds on Wednesday. Phone appointment on Tuesday for bowel probs. Like my mum used to say it'll all come out in the wash. Just too much wrong with me at once I think it's hard for him. Xxx
Thank you, yes it is a shame we lose friends, but you've hit the nail on the head, we can agree to an outing then come the day can't manage it. And yes as you say we do mind, we are the same as everyone wanting to meet up, but we lack the energy, and people can't or don't want to understand. Thank goodness for these groups eh!. I know my social life has become smaller and I compensate by enjoying crafting and online groups from home. Or as its my birthday next week ordering food in like you so I can enjoy with two good friends who also have osteoarthritis so get it a bit! Enjoy your tea tonight and dinner tomorrow xx
I live on my own, and as problems occur, I do it all. I have learned to adjust. Scale down. I moved into a smaller place, no stairs. Family is no help at all, sadly. I have grown kids who dont visit or communicate. Busy with their own lives. I have no relatives! My parents are gone now, were both immigrants, and my 2 children know this but ignore me anyway. I have been divorced for a very long time too. And I am an only child!
If I cant walk, a neighbor will walk my dog. I am having another neighbor help me with cleaning now. It makes me sad to hear about the dark spot you and your husband are in. You really are so lucky to have each other. Scale down your life. Sometimes my condo is my condo, the beach across the street! Sometimes it is my rehab facility, as I wait for aches and pains to subside. And sometimes my condo is my nursing home, where I don’t get out of bed much. I am grateful to have this place to live. We get hurricanes, nothing too bad where I am, so I will not evacuate, like many.
Im on new meds and also have hope that they will work for me.
I hope better days are ahead for you and your husband!
Bless you,thank you Beachsidevilla. We live in a small bungalow, moved in 9 years ago before all this happened so that's a blessing, small and no stair. I can't imagine not having him here. It's sad that our kids forget us sometimes if not for us they wouldn't be here after all. Just a phone or video call first doesn't it we don't wish to tie them down just to know they care. We'll be fine in the end. It's just been one thing going wrong with me after another or before the other has mended. We are certainly lucky to have each other. I hope your new meds work for you.I'd love a beach over the road 😊 x
Oh Haz58, I really feel for you both. It’s horrible how some people can take, take, take and don’t even think to give back, it’s quite weird really isn’t it.
Your husband sounds a real treasure and it’s horrible to think of him being so upset. You’re right, help others if you can- but only if you’ve got the time and inclination after you’ve sorted yourselves out.
Are there any groups for men in your area? The nature reserve we were at last week were advertising walk and talk walks for men walkandtalk4men.com/ and there are Men’s Shed groups menssheds.org.uk/ there might be one in your area - whether he would go or not is another matter but that sort of thing might suit him.
I lost friends I’d known and worked with for years when I had Graves’ disease (autoimmune overactive thyroid condition) they just didn’t understand and one of my side effects of Graves was being really intolerant so it was kind if ‘goodbye’ from me. Sad but no great loss really.
As for the younger generation - for a start I don’t think they ‘get’ bad health and I don’t think they realise that their day to be old will come!
Just keep on being kind to each other and enjoy those meals that are on their way - what a treat.
Thank you Fruit 😊 chippy now ordered for tonight. Not healthy but what the heck! We deserve it I think. You're right, when younger you don't appreciate what ill health is unless you're an unlucky one who suffers early. I'll take a look at that site and look into other stuff for him too. He may try it but he may not, he's quite shy with new folks really. Thank you. 🌹🌹🌹
I’ve always been a ‘drop everything’ person to help someone in a crisis but sadly it rarely works both ways We’ve been badly let down by some family members and I’ve distanced myself where I can but it doesn’t stop them still asking me to help!
I’m so sorry your husband felt so bad and I hope what you are doing to show how much you care is lifting his spirits a little. I’m sure there will be carers groups in your area where he can get offload and get some support from people in the same situation It can be a huge help even if he doesn’t go regularly. I get that he’s shy, a lot of men are, so might it help if you asked someone to come and chat to him at home, either from a carer group or a Men’s Shed? He might then find it easier to go if there’s going to be a face he knows.
Oh I didn't know they would come here. I'll definitely look at that. He said this morning before he retired he could talk to his workmates but they are still working. He is meeting up with them soon though he told me yesterday. X
I know carers groups are very aware of how difficult it can be for people who are not natural ‘joiners’ to just turn up. I’d bet too there are many men in the men’s sheds group who struggled to get there on their own. People in our/your situation can be very understanding and helpful because they just get it and don’t judge.
Just wanted to extend some warm hugs your way, there really are some peaks and troughs with the bloody disease and its easy to forget we don't travel through these alone but take our family with us.
We find out in our time of need who is there for us and who isn't, it's all so easy to turn resentful towards the ones who aren't but I find it just takes energy ! But its SO hard not to feel like shouting at them isn't it!!
Some people are definitely takers in this world.
Sounds like you have such a close caring relationship with your husband, I can see why you want him to be closer to his brothers, they are missing out.
You worry for him and he's worrying for you, really they should cancel each out and you would both be more relaxed! It doesn't work like that I know (always easier to give advice rather than take it isn't it 🥴 I need to listen to myself).
My consultant told me RA and fybromyalgia (i have fibro too) loves empathetic people, the more we exhaust ourselves with trying to help others and worrying for others the more energy we loose and the more these disease prosper. Time for more order in meals and take a little worry and strain off you both x
Just remember you are loved xx
Thank you Marion 🌹 you are right of course about the energy it takes to be angry. We've talked a lot since my post and he seems happier today. I've told him the only way is up after the 5 months we've had. 🤞 And i said as long as we have each other we'll get through anything. We always have in the past. He loved his chippy takeaway last night and looking forward to his delivery of Sunday beef roast at 2. 😊 Xx
Such a wise comment - and very true about people with autoimmune diseases often being empaths. I have had to quit a couple of social network forums recently because I found that each night was bringing private messages from yet another person I'd tried to support. It felt as though they wanted and needed more and more from me without putting in the time to read what I'd said or study links I'd provided on the open forum.
I'm starting to understand that being an empath is not always a positive for me or for others in my own real world. Energy conservation and self preservation go hand in hand!
Its a hard balance isn't it as some will just continue to take x
well I’m learning to restrict, mute or block now even though it makes me feel rotten. I think unsolicited messages asking for more and more advice and support are a kind of harassment although I feel so sorry for those who are so desperate. I am trying to retrain my empath mindset to the firm-to-be-kind sort. My immediate family are the exception but true friendship is about finding a balance that works. X
Sending my thoughts to you both, it's so hard having this disease! Take care both of you
it’s very hard on the poor other halves to cope with holding so much together - I totally relate to what you describe. We are lucky to have young-ish adult children who emotionally support my very similar sounding gem of a husband.
I don’t have RA but have rarer rheumatic disease overlap and things came to a crux when he went to the vet before Christmas with one of our dogs, who is extremely old and on his last legs. I had said I thought perhaps his time had come and my husband agreed to have the “big conversation” with our nice vet after exam and confirmation of severe arthritis and dementia had been made. He totally surprised (and embarassed) himself by breaking down and she had to close the door and tell him that it wasn’t our dog’s time quite yet and there were some treatments she could give him until it was. Since then she’s asked him about me and he’s told her so she now always wears a mask. But I think she has worked out that his emotional breakdown was related.
When he came back to the car his face was all swollen and he burst into tears again so I got a horrible fright. I was on phone to our youngest son who lives far away now. He said to his dad “it’s really all about mum you know - you’re so worried about her all the time and you bottle up and then it naturally comes out in this way”. My husband and I hadn’t really understood this until our son pointed it out.
My husband has quite similar family circumstances to those you describe for your husband so I totally understand about the sibling related low self esteem - which is so sad when they are such kind and lovely men. For me this has served as a reminder that I must be careful to appreciate him more and give him all the emotional support I can muster up.
I have always tried to help on forums and closed group for my rare conditions and previously volunteered for charities. But now I’ve had to stop all charity work and focus on self preservation for both our sakes. If I don’t and start offering one-way support to others including extended family and friends - I find him looking at me sadly again because I get so tired and stressed out. It’s okay if the person isn’t too needy but sometimes we hand a drowning stranger a rope and they can end up pulling us down with them. I’m still learning this the hard way where it comes to advising newbies on stuff I know a great deal about from long personal experience.
So I read your post and remembered the recent vet day and how I thought at the time how lucky I am to have such a wonderful chap to share my life with. It is very hard on those we love most when we are so ill and sometimes we need reminders that they are suffering with us and get so lonely. Is there any way you can similarly remind your brother-in-laws so they can give him some brotherly companionship and support? I know it sounds unlikely but they may have simply forgotten because their own lives have got in the way? It wouldn’t have to come as a lecture and only if you can avoid revealing your very understandable anger. Maybe not - and of course you do have each other at the end of the day and that matters most. But sometimes we all need reminders that family members we love can feel taken for granted or even forgotten, abandoned and perhaps this is the case with your bothers-in-law and they won’t act unless they are made aware? X
Thank you for your lovely words OldTed! All true. We found out his 2 brothers had a bust up a few weeks ago so I'll leave well alone for now I think. One of them is so opinionated and has to be right all the time, the older brother of the 3. Life is too short to get into arguments with family so I'll steer clear in case with feelings between them at the mo I make things worse. He did talk to his middle brother a bit last night about our situation and he said he hadn't realised! It was when hubby said we'd hired a wheelchair for my hospital appointments. So maybe that might have hit a nerve. We'll see. Xx
I'm so glad I didn't put my foot in it inadvertently! I sometimes think I shouldn't really follow this community because my diagnoses has changed over the years and my issues aren't really same as many here. But I'm as disabled as most I've known with inflammatory arthritis and, unlike when it was misdiagnosed as RA, it's actually much harder to speak about because my rheumatic autoimmune disease has mainly targeted my GI tract from top to tail and my husband now cooks and eats for one - which he finds very lonely.
But still the commonalities are greater with systemic autoimmune diseases than the differences. NRAS posts tend to come in first on the daily HU alerts and I saw yours and just related.
Yes spot on re brothers in dispute and choosing how to convey your husband's need for their support. The dynamics between 3 siblings are often hard to navigate I've found - speaking as eldest of 3 and as a parent of 3. Just giving clues and hoping they pick up is a wise move.
Also I guess I try to cut friends and family some slack these days because I think it's very hard for most to relate to chronic illness unless it's directly impacting on them. And I if I don't share that much about my state of physical health and mind with friends who aren't similarly affected then others, including family, might be keeping their own stuff to themselves as well? I have a dread of unburdening to family members only to find that they have similar or worse stuff to cope with - but didn't want to worry me over? xx
Oh, (((big hugs))) for you, your husband and your poorly dog. I don’t think he needs to be embarrassed at all, vets must be used to owners being upset. I’m sure they see it all the time.
Aww thanks so much. I confess I was a bit nonplussed by him getting so emotional initially until youngest son quickly figured it out and my husband then agreed. He's a strange mix of bottler and weeper is my man! For me I was expecting the vet to say what she said and just very relieved that there are treatments to ease his pain and dementia until his time comes. But yes she was a dab hand as they say and they both go back to her for monthly injections now so she monitors him - and also my husband a bit too as main carer for dogs and for me xx
I am so sorry that you are suffering so much physically and emotionally. It is hard when people don't respond in the way we think they should. I get upset about that too. I have to keep reminding myself that we are all different. It doesn't mean they don't care necessarily but that they don't know how to be the way we want them to be. Your husband sounds lovely and it is hard for our loved ones to see us ill or not being able to do the things we want to do or used to do. You have each other so just try to rest with that and let go of the others. They will come round in their own time. Love and best wishes
it’s all been said here already, but I thinking of you both. Many years ago I cared for my partner through a mental health crisis for two years before he was committed and I found talking the best therapy and would ring the Samaritans daily. The outpouring helped enormously and they are happy to just listen, it’s so cathartic I really recommend that your husband tries speaking to them at least once. Sending you both strength.
I'll try but he's very reserved in speaking to anyone about how he feels. He's very good at hiding it. Again all from his childhood. We'll get there. Like I said to him we have each other what else do we really need. And he's to stop trying to be superman. He laughed at that. ☺️
so sorry to hear things are rough at the moment. I think we all understand how families and friends often don’t get our illness and the impact it has on our life.
Would it maybe be possible for you to reach out to his brothers, and explain he’s low in mood, and could benefit from time with them. Often we have to state the obvious.
Sounds as though hubby is also lonely in the sense you’re not enjoying each others company whilst watching tv. Do you have a recliner that you could use, or purchase one second hand, to allow you to spend more time out of your bedroom.
It may be worth looking at agencies for support, there are many befriending services, where you link up with someone. It can be done either over the phone, or they can come round, and are good at letting you off load your concerns. Also possibly looking at getting a cleaner, if that’s an option, then he can focus more on your care, and enjoy quality time with you. I’m not sure if you claim benefits, but things like attendance allowance could help fund a cleaner.
My mum was a full time carer for my dad, who had Parkinson’s and dementia. She had a young lad came 2hrs a week, which allowed her to nip out shopping or a coffee with a friend. Mum was a bit concerned initially how young he was, but he thoroughly enjoyed all the tales my dad would tell him. They became good friends and dad looked forward to his visits.
I do hope things improve for you both. Organise a date night, takeaway, a bottle of wine and a good dvd, and switch off to the issues around the other family members. You have each other. Good luck with your upcoming appointments 🤗
I'm actually thinking of looking at a cleaner just once a week to help us. Mainly the bathroom and kitchen. Hubby likes vacuuming, weird I know. A cook would be good but a lottery win needed for that. 😊 Thank you. That's another if his worries that the new RA meds will make me ill like the others. But I've said I won't know until I try them. That's all we can do is try. Xx
I had to take medical retirement after suffering a severe stroke, as a result of an adrenal crisis. Prior to that I worked full time as a nurse. We shared the housework, but after I retired I felt a duty to do all the housework, as he was coming home exhausted. It took 2 days to do each week, which is always a struggle. It’s just the 2 of us, so I’ve reduced it to fortnightly. Hubby says we should consider getting a cleaner in to do the tasks I struggle most with. So I plan to look into this, I’m fortunate that my hubby fully gets his my illnesses impact me, and has so much patience. Especially when we go for a walk at snails pace. Hopefully you tolerate the new meds, I’m fortunate as I seem to have the stomach of an Ox, despite over 20 meds I have no side effects from any of them. Will keep my fingers crossed for you 🤞🤗
How sad. My friend’s hubby has reacted similarly after caring for her, plus doing everything else we women normally do. He was anxious, depressed, lost confidence and no zest for life. She contacted her Drs and was given an appointment for a few weeks ahead. She dug her heels in and said he needs seeing now. He is now on anti depressants and has had a phone call chat from a counsellor and has a F2F with one in the pipeline. A few weeks later he is so much better and has a reason to get up in the morning. Hope this helps.
Your husband sounds lovely, we all have our strengths and weaknesses but he cares and that’s what matters. Reading everyone’s replies has made me cry, I can hardly see what I’m writing. I miss my husband so much, he died 4 1/2 years ago and was my rock. My brother died in December and I’m feeling very alone, no kids. It’s true, people don’t understand the disease, they just think you have a bit of arthritis. You’ll get through it. It’s good he has let his feeling’s out and released his pressure valve so to speak. Take care
Oh Akaka I'm so sorry this has upset you. It must be even harder for you. I'm so sorry for your losses 😪 I'm very lucky to have him I know. We first met when I was 15 and he was 16. I was his first love. We stopped seeing each other after 2 years. But 13 years ago he found me on friends reunited and sent me a hello message. We were both divorced and living 3 minutes away from each other would you believe. We met up and then 3 months later he had a heart attack! I moved in to look after him and never went back to my house. We married in 2012. Yes he is my rock as I am his. We talked a lot yesterday and this morning and he's feeling a lot better. I read him some of the replies I've had where other people's other halves have broken down too. So this group is helping him as well as me. You take care too. I I wish you peace in your heart. 🌹🌹🌹
Bless you, sounds like a real love story, you were meant to be together. 😍 I’m so pleased he is feeling better and it’s probably a relief for him to release those tears, men are very good at bottling feelings!
It didn’t upset me so much as touched me and just hit a heart string that opened up my heart and the tears just came. I think it’s because I’ve been battling to feel better and be without pain for what seems like years and I’ve been particularly bad the last 10 months and changes in meds have not helped, only steroid jabs have given me some relief over that period but never enough to get my CRP down to normal and I just thought how lovely to be looked after and loved just as I had been. I was always brought a cup of tea in bed even when he was able to after his cancer diagnosis and treatment. When we got together everyone thought it wouldn’t last, but we managed 35 years, married for 30 and we looked after each other, which is what you two are doing in your own ways and it brought back lots of memories . I was only diagnosed December 2020 although probably had it for a year before but because of Covid couldn’t get to see anyone. Big hugs to you both
The people that matter are the people who have empathy and love in their hearts Akaka and there are loads of us across these forums thank God! The rest as you say are blissfully ignorant of many of our journeys, I doubt they would have the resilience we have learned on ours. Please be comforted by the virtual hugs 🤗 and care 😘 from this thread. X
Thank you Ernie, hug gratefully received x
Is there a carers organisation in your area. If you are registered as unpaid carers they should contact you and see what support they can offer. This includes both cared for and carer.You get a carers card, although we know we are each others carers with the likes of DWP etc, the carers card is issued by your local authority.
We are going to a half day event tomorrow which will include a talk and an opportunity for carers, and the cared for if they can, to do something in the polytunnels and greenhouse at a locally based establishment.
The carers trust!! Just remembered their name 😂 might be a good way for your hubby to get some support and meet other people who know what all the hard times are like?
I am hoping my hubby will enjoy tomorrow and as a keen gardener before his RA hit adding to his other conditions, he might see something he could do and pass his skills onto other people.
Free lunch too what's not to like?!
Carers trust also do respite care for some folk too.
Ask at your surgery you've nothing to lose and maybe things to gain as we journey a very bumpy, unpredictable road.
Roll on summer 🌞🌻😎⛱️
He's not anywhere yet as my carer. We're waiting to see the outcome of my hip/leg appointment. If it's going to be a long haul thing then we'll look at making it official. But I've kept a pic of your reply to refer to if it comes to that. Thank you so much for your help. 🌹🌹🌹
Families 🙈 we've all got them.Your hubby sounds amazing, tell him from us.
My dad used to say about people
"That smart they know nothing" it often applies to really academic people..not an ounce of wit or Sense. Your hubby needs to value the real qualities he has...kindness...caring.. compassion. Those things can't be learned out of a book.
So true! Wise man your dad Wilbert ☺️ I will tell hubby what you said. Thank you 🌹 My sister came today and told him she and her hubby are always here for him as well as me and gave him a big hug. Her hubby nearly died from sepsis 5 times 18 months ago so she understands all too well the stress that can be involved and the feelings that come with your loved ones being poorly. He's cheered up today. Ate his delivered Sunday roast and thoroughly enjoyed it. Xxx
Did not want to “like” your post but wanted you to know that I fully appreciate what you are going through! My husband has been the same recently. My sister who lives away keeps telling me to eat better and sort myself out… my brother is 80 and has his own issues. My daughter is living in the states. Most days we cope some days I don’t!
Be kind to each other. 🌻
Bless you Green 🌹 it's hard but we get there somehow don't we. Like I said to him as long as we have each other. Sending hugs. ❤️😊
I think my husband would like to start a support group for husbands who ask their RA wives their preference to then do the opposite. Mine is tired, exhausted, and can’t remember anything from our living room to the kitchen. It’s 3 metres max. I love him to bits, but somehow I need to give him time and space.
Haz58 it sounds as you too have a brilliant guy. Love him to bits.
Oh I do mld78. ☺️ And even with all of this he still loves me. He's an amazing guy, he just never realises it or believes it. We'll get there as will you too. I think they feel guilty taking time out. But they do need to as do we sometimes. Last night he watched a film, a gory film, that I'd never watch, enough gore in the world already for me, while I was listening to an audio book in the bedroom. He enjoyed it 😄
Films! I went to bed last night and I must have fallen asleep, as I woke up due to deep, belly laughs from our living room. He'd found a film to watch and was totally amused! It was good to hear.
so many of us in this position
I fell and broke my hip 6 weeks ago and after a hip replacement , i have been reliant on my husband for so much support., he has been marvellous and taken over all my household tasks as well as his own/ Ive had to insist that I can be left safely , at first by having friends pop in to visit me and now I'm safe on my own but he is, understandably, quite paranoid about the risk of my falling again!
One of the hardest things has been relying on someone else for lifts everywhere. The good news is that the hip has repaired well and i can now dress myself and get around the house with one crutch at the most. The annoying thing is that thanks to my underlying condition (RA and scleroderma_ my shoulder and wrists are now causing more pain than my hip!!!
Aw yes hubby went out this morning and gave me orders to be careful, to ring him if needed and not do anything! Hairdresser came to trim my hair so I've been fine. ☺️ Had a good natter with her. Hurting now from sitting but it's worth it to look human again! 😄 I sympathize with you 9n shoulders etc...shoulder pain is terrible! Mine have been 9k past 2 days after taking steroids for 5 days now. Fingers crossed it doesn't come back like last time? 🤞We have good husband's don't we, worth their weight in gold. Xx
they certainly are
Oh bless how hard it all is. I hated when I was diagnosed and told my hubby, cos I knew he's not a natural at the caring role. My hubby is bi-polar so we've been a team for decades & helped each other with our psychological & emotional issues even having individual counselling. The bi-polar was never a difficulty till I went from a super energetic, very active person to bed ridden when first hit by RA. My hubby is dreadful with physical ailments, so we give each other space.
Your delightful husband sounds a gem & it's a shame his family left him feeling low.
Just a suggestion (I have used such support ) are there any " carer" support groups local to you? Sounds like he needs some support more for dealing with lack of family there for him than for his great "care" of you.
Anyway he gets a great job from me. Hope things improve asap. 🤗
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