Down in the dumps......

[sylvi]

Anybody feel so alone with these diseases of ours that even in a room full of people you can be so alone and family as well................

[Hidden]

Hi Sylvi,

you're not alone. You can talk to us anytime. Please call if you need to.

Beverley

[Heathersmum69]

Morning Sylvi,

I know how you feel ,lately I have felt like screeming,I feel so darn frustrated with this illness . Tomorrow I have a hospital appointment with my new consultant. He is hopefully going to give me a new diagnosis . He thinks that I might not have RD and that I have Fibro instead. All I know is that I am in agony,I am stiff all day ,I am very very tired . I have had this pain at the base of my head behind my ear that is very painful. No tablets touch the pain,not even Tramadol.

Lately I have tried so hard to cope and get on with it,and not moan as much . I have felt lonely in the process.

You sound sad today ,I wish you well.

Big hugs.

Jane xx

[Hidden]

I don't think people can understand this conditions unless they have it I for one would not have understood the pain and upset we go through I have to say it's the good friend on this site that have got me through the dark days hope you feel better so you are so uplifting to others

[P-jay]

Hi Sylvi. It can be lonely at times especially when you are feeling a bit fragile and people don't seem to understand. Hang in there and try to think of one thing you are grateful for each day. I know it can be hard to even find one thing but it has helped me. Don't hide away from family or friends though because even being lonely in a crowded room is better than total isolation.

Sending a big hug your way.

[Sanbanan]

Hi Sylvia.

I have only just posted on here and then saw your post.

I am also feeling like you........I feel that I don't even discuss my problems with some people anymore as they don't understand or don't want to understand what you are going through. It can feel lonely.

It is very frustrating but this site seems to be a good place to talk to others who do understand.

Best wishes x

[DC56]

Yes I think we all feel that way sometimes, there all up enjoying there selves no aches or pains their smiles are relaxed and free not like ours but we still smile so no one knows about the pain we're in because we don't want to spoil the day / night it's very hard to look like your having fun only if you've been there can you see the tell tail signs in others , I hope you feel better soon Sylvia lol Dawn x

[Rosebaywillowherb]

Hi Sylvi,it's very lonely living with rd,all around us,people are going on with life,not thinking about bending, running,reaching,standing, sitting, the list is endless,for us, everyday is a challenge.I often just smile through when asked how I feel,as no one understands except fellow sufferers.I try to be positive,but have days when it all seems so hopeless,I hope you feel better soon.(post some more lovely photos of your flowers,that will cheer us all up)x

[sylvi]

Thank you all very much for your replies and i see i am not alone in feeling like this. I mean i can help others when they are feeling down,but i don't know how to say how i am feeling myself. I think it is my perception of how others feels about me and not what is felt in truth. My hubby is a great man he cooks cleans and does everything for me,now here comes the but,he doesn't understand the pain i am in and he doesn't know how to handle my tears when all i say is i want him to hold me and let me howl it out. I just feel they are impatient with me because i can't join in like i used to.xxxxxxxxx

[cathie in reply to sylvi]

You're right Sylvie - I'm in a similar position. I wonder how many times I've said 'I'm sorry' for no reason.

[farm123]

Yes. When I am bad I cant seem to find the energy to participate and everything just seem to go on above my head. Its a strange feeling to explain. Farm

[bassiefromholland]

Hi Sylvi,

Understand you fully. It a life long battle against pain, tiredness and side effects of meds.

I hope the dun wil shine soon for you.

XxxxBas

[fastball]

I fully understand what you are saying. Between my pains and my daughter i dont get much time to myself. Unless something in me says halt, take a break and look after yourself for a while. I have only spoke to her on the phone this week as i have an infection i dont want to pass on to her. I do speak most days to her even if i dont go down, she is only on the other side of the estate . I often say i dont have time to be depressed, but yes it still hits me now and then. I try and keep on with doing things on a daily thing, and i smile to people who I pass in the street and say hello i usually get a reply but not always.

I hope you all have someone to talk to as well as on here. Person to person is always better. I have a husband that always asks what is wrong and replies i hurt wherever and that is not the only place, welcome to my world. Not what you want to hear. So most of the time i dont say.

Sending you all hugs and hope things get better for you. I will always answer you and help if possible. XX

Chris

PS sorry for the ramble. XX

[sylvi in reply to fastball]

Ramble all you like darling i like a good ramble myself.xxxxx

[Hidden]

Trouble is Sylvi we ARE alone really, only us can manage and handle our wretched disease, we really are on our own in that respect.  My own family still think I am wonder woman so just now and then I explode and let them have it !!    I think in their way by trying to dismiss my disabilities they have the old me back but that's never going to happen.   We are making some improvements though, for instance my son in law has just changed his car to one which I can actually get in and out of, so I can go on some family outings with the family, which is very kind and thoughtful.  They have also bought a larger house and the spare room has been knitted out for me, so that if say hubby has to go back in hospital I can stay with them and not be here on my own.

I appreciate these thoughts but I still feel I am a drain on them.   So I think we must plod on and cope as best we can to have a life, even if it's not the life we would have chosen.    It is a lonely world when we can't get out etc etc.  But as long as there's life in me I shall continue to fight this wretched disease.    

Try and be positive Sylvi, summers not that far away, holidays maybe and garden to sit in, etc.  I've got involved in making little hats/mittens for Prem baby unit, takes me ages as hands so bad but who cares I enjoy it.  Also I go into an Infants School once a week and read to groups of children, then they read to me, it's a joy.    They know I am disabled because I use a powerchair and mostly these little children are so,gentle and caring, and when I come home I feel truly uplifted for a while, better for me than any medication.      

I hope things brighten up,for you Sylvi, it upsets me to hear you sounding so low.

Sending a gentle hug and wishing you well,  xxxxxxx Lynda

[sylvi in reply to Hidden]

You hit the nail on the head when you said you feel like a drain on them and i feel like i am in the way all the time as they work round me. I think if i wasn't in as pain i would feel brighter and if wishes were horses beggars would ride.xxxxxx

[Hidden in reply to sylvi]

You are their mom, you are a wife and they maybe long for the fit and well Sylvi back, but that's not to be, it's all about adjusting life around your illness.  I make absolutely sure that my family and friends know my limitations then they are not too disappointed when I have to take a back seat.   I so miss my old life but eventually realised that I would have to go in a different direction if I was to manage.

Of course my two daughters both suffer with lupus and they do,have a deep understanding of my problems now since they were diagnosed.

Of course I blame myself for passing on my faulty genes to them, that's another worry I have to live with.  

Anyway, you are not a drain on them, I'm sure your family love you to bits, maybe you should try having a rant now and then like I do, it usually always gets a reaction, haha !!!  Don't store your feelings, let it out.   Tell them how you feel,because trust me, they won't understand till you properly explain, well my hubby doesn't that's for sure !!  

Hugs xxxxx Lynda

[cathie in reply to sylvi]

Sylvi I dont really know you except on here, but I'd be surprised if they saw you as a drain. I think you bring happiness and colour into their lives and that is important.

[flow4 in reply to cathie]

Hear hear! Sylvi, you are a delight, even just in this 'virtual world'. I'd be totally gobsmacked if the people around you didn't like your company even more than we do!  

[Hidden]

I too feel so alone and selfish. I am struggling with painful hands and a swollen knee.  My elderly mother (who refuses to get tested for dementia) wants me to come visit. I know she is lonely as she just lost her husband. She phones me, up to 15 times aday. (She forgets that she just phoned me) Each time she calls I say I'll come visit you on Wednesday....Well today is Wednesday, and eventhough I love my mom, I just want to stay home as I'm in pain. I don't want to drive the 30 miles to her place because my knee hurts. Whenever I tell her I'm in pain, she panics and tells me about her nieghbour's pain. She'll continue on gossiping about her many nieghbours. She tells me who is sleeping with who, etc....Her gossiping can be really mean as she rips her many nieghbours apart. She wont stop complaining about how my sister keeps stealing her laundry baskets....I feel so drained...My hubby says phone her this afternoon and pretend you saw her yesterday...lol

[JacquiThomas999]

I sometimes feel that way too. I have a horrible woman at work who insists on commenting on my sick leave, it is none of her business. Sometimes I sit there and listen to the chat and want to shout out loud " at least you are healthy". Hubby is still the best though. (I didn't kill him although he gave a horridious cold that kicked off my asthma.) But this forum keeps me sane and informed. All the best Silvi

[Yooneek]

Have total empathy with you Sylvi

We are warriors - most of the time - but sometimes being a warrior is just too hard....the almost constant pain drags you down into the depths at times espcially when you cannot get over the door for weeks on end or barely walk or stand.    

I find my solace watching online programmes on Netflix and Amazon Prime on the bad days - barely getting out of bed and only then to go to the loo....

My daughter of 22yrs is at Uni and my son of 24yrs is about to join the police but works full time meatime so I spend many many hours on my own.   I use to long for peace and quiet **sigh** I overdose on it now! lol

Keep on keeping on x

  

[sylvi in reply to Yooneek]

It is so hard isn't darling .xxxxx

[Hidden in reply to Yooneek]

Yooneek, your comment made me smile. I've spent the last 2 months on sick leave watching Netflix. Before RA, I used to want time off from work...now I want to go back to work lol!!!

[Yooneek in reply to Hidden]

Been off work since Jan but today managed 3hrs with the help of the best RA consultant who has been and continues to be supportive beyond my expectations.   

He popped in to see me at the day ward 2 weeks ago whilst I was having my 6hr Rituximab infusion and could tell how awful I was - he arranged then and there for IV steroids that day and next two days.   Back on my feet for 12 days now and feeling almost normal but still need the trusted walking stick 😀😀😀😀

Have you watched house of cards on Netflix?  I love it! 

X

[Hidden in reply to Yooneek]

Love House of Cards too. If it wasn't for this show, I don't know how I would fill my days . My husband and son are at work and my daughter is in College. So it's just me and my arthritic dog at home. lol I see my rheumy on the 30th of this month. I wonder what drug he is going to add on to my sulfa and hydroxy? My guess is MTX.

 

[Pedz]

Hey guys 

Sylvi I hear what you say and yeah the struggle is real, but you are certainly not alone we all have the gift on here so we can all relate to each other, my girlfriend is a star she comes every hospital visit if she not at work, keeps me on track with my meds and puts a smile on my face when smiles are hard to come by, be lost without her but she can't cook she is terrible in a he kitchen so how ever hard it gets I will never let Sharon cook lol 

[sylvi in reply to Pedz]

Ha ha ha ha you have made me laugh at yoiur last comment.Thank you.xxxx

[2malinka]

Hi Sylvi

I don't think anybody who doesn't have this vile disease can understand what COPD sufferers go through on a daily basis.  I do have great support but when my disease went from moderate to severe, is was devastating.  It is hard for others to understand that something you take for granted like breathing becomes a daily struggle.

Look after yourself.

Malinka

[sylvi]

Thank you all for your lovely comments. I didn't expect the response i got and so many of you understand what i am saying. It is my perception of the situation not the reality,but the feelings are still the same and my family love me to bits,but like you have all said they have no understanding what its like as they don't suffer it do they don't need to as i wouldn't wish these diseases on them. On a lighter note i slept better last night. Happy easter to you all.xxxxx

[Jackie1947]

Hi Sylvi.  I can relate to you . It's hard to pick yourself up smile and get on with life. Being on a merry go round of pain, medicines and hospital visits you begin to think what it must be like to be 'normal' .  We carry the burden of not upsetting our family by showing how exactly  we are feeling. Having discovered this forum has been good for me and the support embarking on biological infusions has been heart warming. There are support groups around the country that run courses to help us cope and empower our lives to try and take some control back rather than feeling lost and isolated.  I wish you well. Jackie

[sylvi in reply to Jackie1947]

Jackie i don't know about you,but these courses are great,but they don't do anything about your memory though. I have been on a pain course and i have forgotten most of it. It didn't help that i had just broken my leg when i went on the course and the pain was horrendous.xxxxxxx

[Jackie1947]

Oh dear sorry to hear that.

[Sheila_G]

Sending love and comforting hugs.  Never feel alone.  We are always here. x