If you can't get you family to understand what you have to go through each day let alone when you have a flare-up
I was thinking it would be best if I lived on my own.
Sometimes I wish I lived on my own.: If you can't... - LUPUS UK
Sometimes I wish I lived on my own.
Written by
Kedaco
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45 Replies
•
I don't think you are alone with these thoughts. I have thought it many times. Sometimes I think it's my own fault for trying to keep going, giving the impression that I'm not too bad. Maybe I should collapse in bed, ring a little bell for service, and scream out loud in pain all the time !!!! Yesterday I visited my seriously ill brother, in the royal London hospital. I live a long way away, so had a long train journey, then got lost in the hospital, trying to find him. My sister came with me, and she had to help me the entire day as I was getting mowed down by people rushing about. I had 2 walking sticks, got soaking wet as I don't know how I am supposed to hold an umbrella too ! We didn't get back til gone 9pm. Today I have been in bed all afternoon. I get up to find, dirty dishes stacked on top of the dishwasher, the cat and dog have not been fed, and they are all hoping that the laundry fairy will have been and ironed their favourite shirts. I know I sound as if I am making light of it but seriously, they cause me so much extra work and stress. The fact that I am typing on here means I must be better now in their opinion.."...... I could of course say to you about getting a pamphlet to explain to your family, but I know you are beyond that, as i am.
I wish there was a like button on here....I would like your post 6161 and hope tomorrows a better day. Kedaco.....just keep talking to us all as we all have days when we think like this. Take care.
Hi to both 6161 and Kedaco....bless you both-I too sometimes feel it would be easier if I was living alone - I have been feeling a bit better of late-but still find it hard to keep up with the all housework etc.,also had my Grandson today and he decided to empty the whole of his toy box out in the frontroom, while Nanny was doing dinner-if he had put them all away on his own-then they would have been all mixed up-so 'muggins' here done it-after dropping him off I was shattered!! The hoover has been out of the cupboard for 2 days as just have not had the energy to do it and instead of helping my son and boyfriend just look at it and I am sure they are thinking 'hasn't she done that yet'.....as mstr says it is another day tomorrow, let's hope it is a better one!! Think I will have to...Dream on.....but I must live in hope! :-)x
To 6161,Kedaco,
I too agree with what your saying but for a different reason. I wish I lived on my own so I could choose the way I do things geared to how I am each day!. Having to keep things so normal for my parents,with a tough illness is very hard some days!.X
I know how u feel my dd and her 5 month old ds lives with dh and me and it's exhausting
Oh no, not me - being on my own with this disease would drive me nuts! At least this way I drive everyone around me nuts instead :). I'll bet it isn't easy for those around us either - just when they're thinking of having a fun day, here're we are, groaning and gloomy and reminding everyone about illness and hospitals and death (things no one wants to get acquainted with until very old).
I get the frustration though, arghh!
I like to moan . It's my way of saying help cos I can't flipping do it . Like get a lid of a jar. People laff at you trying. I don't like people know I struggle to do most thing most days . And don't ask for help. They all know I'm sever in agony trying and say omg you special again lol
Yes. With Lupus, there ought to be a relationship section where sensitive topics can be discussed if I'm honest.
I think we're all with you on that one kedaco. Because we don't look "sick" people assume were fine. Perhaps we should stop pushing ourselves and do like 6161 suggested and invest in a bell. Hang in there and take solace from the fact that we all understand what you're going through on here. X
Well said i fully agree with that .because people carnt see u are ill .they think there is nothing wronf with u ...xx keep going everybody we can do this . One day at atime .x
It is difficult when those around you don't understand, but I have a sort of unwritten agreement that when I am in my room behind closed door, I am not to be disturbed.
I have my daughter's room now since she married as I was unable to sleep with the snoring!
I do have times when I have to remind him that I need times of peace and being alone, but generally he is a lot more respectful now.
However, I would never get service if I rang a little bell - it would be ignored!
I learned to put myself first just as I realise he has always put himself first.
One day when I had cooked myself a meal and was tucking in, when he was out and I didn't know what time he'd be back, he came back while I was eating and sniffed my meal and said that it smelt good.
I stopped cooking for him ages ago because he would say he didn't want it and eat junk food instead - I can't eat junk food, unfortunately or fortunately as the case may be.
I said I was hungry and I needed to eat something good and I didn't cook him any as I didn't know when he'd be back or if he had eaten out as he has done regularly since I became ill.
He surprised me and said good for you, I am glad to see you putting yourself first.
I said to him, I have learned how to do that from you.
We women and some men can be really stupid sometimes and think that we are not worthy, but always have to put others first even when it means we damage ourselves. I realise I did that and I am slowly learning. I think this immune system problem has really been sent to teach me a lesson!
You're right, being ill has taught me a lesson to put myself first. No one else will do it so i have to do it myself. It's a pity it is a harsh lesson.
Good for you, sandwiches.
Cann......wow. I felt every word you said. I have been where you are and also believe lupus was sent to teach me a lesson. I am still learning to believe I am worthy of putting myself first instead of others all the time. It has been a hard lesson to learn.
Yes, the body has a higher intelligence, I feel, that if we don't listen to it, it will make us listen!
Cann,
I was always putting others first to my own detriment. I told a family member I was diagnosed with Lupus and she said "oh" and that was it. Never asked me a thing or inquired how it affects me. That was a turning point in my life. I am putting myself first and learning that I am worthy of good care and kindness and support. Learning is the key word here....it hasn't come naturally. It is partly or maybe all of my own doing. I realise one must respect oneself first and set good boundaries as to what will and will not be tolerated or accepted. People pleasing allows others to walk all over you because healthy boundaries are non existing. So lupus has taught me to lay down some ground rules and to respect myself. Still learning though! I have re-read your post several times and it is so full of wisdom and I am so thankful that you posted it. I do hope you are still taking good care of yourself!
Blessings🌹
Thanks, I am still doing my best to take care of myself!
It is an odd illness or condition and each seems different and that is why we do have to take care of ourselves.
I think my husband has always had some problem, too, even before me, as he always had to put himself first, as I said,
His problem is different to mine and we eat completely differently and at different times, so that is part of the whole problem - we aren't compatible!
We both have to take care of ourselves, but we do help each other when we can.
Boundaries are good for those who overstep the mark.
It is not your fault you have the problem, probably the way you were brought up and partly your kind and sensitive nature.
My parents were kind and giving and they always taught me to think of others, which is fine if you are fit and well, but once a health problem arises, then it is time to put yourself first for a while or may be for the rest of your life.
I still treat others with respect and help when I can, providing it doesn't endanger myself and health now.
All the best. X
• in reply toBarbarajeand
Oh heck, it was sent to teach me a lesson? I will need to reflect on that, what lesson is being sent? I know I have been very lucky for many years with good health, now the party is over. Well I enjoyed the first part very much and am grateful for that .
my daughter has been so different since she became a mum ,she said she was in denile before hoping I would get better and do the usual running round stuff but she is now my true rock xxx
Living alone with no support is no picnic.
My biggest support is the hospital. They made me believe in myself when others didn't. Lupus unlocked has also been a big help. It's nice to know that i am not alone with having lupus and other problems.
As I understand and completely identify with circumstances being alone is not good either. You can get stuck where you are immobile and worse off all allow the frustration of living in pain get to your emotional psychy and make everything worse. The goal should be to live only with those that understand you, what your going through and assist you to be the best you. Sometimes that isn't family
Family isn't always the best. I know that myself.
I know how you feel my husbands job takes him away from home a lot and when he is away I don't get to eat a healthy meal I'm unable to prepare veg the last time I cooked potatoes I spilt boiling water down me so I do miss him being home as we cook together but I still think he has not come to terms with my COPD
No one will understand anything you are going through but yourself and you are not crazy. Family and friends who don't have what you have say or say to me, quit complaining, roll their eyes, it is what you eat, sugar and so on. Yes it gets old after awhile and I have gotten to the place where I don't talk to them about anything. Come or talk to those who are going through what you are going through. People that support what you are going through. Most of all don't listen to them because they will bring you down and make you angry. I have been there done that. Remember there are a lot of people here and other support groups that care
Thanks everyone for the reply's, I had to stop taking Tramadol because the side effect are worse that the bit of pain relief I get from them. Guess I am getting down because of the pain and start thinking thing I shouldn't.
• in reply toKedaco
Can you not try other pain killers, or is tramadol the last in a long line of tablets. Don't like to read your obvious pain, both physically and mentally. Also a word with Rheumy to re assess your general meds might help to ease your flaring. Please keep in touch, especially if there is more we could advise.
Kedaco• in reply to
Yes 5 years now trying painkillers and happy pills as I call them, I know the docs mean well but I keep telling them it is the pain that makes me depressed stop the pain and the depression will go I am in pain 24/7 the whole year round and every month for the last year I have had a flare-up when the pain doubles and there is hardly a part of my body that don't give me any pain.
• in reply toKedaco
Have your Drs had you on steroids, or thought about upping them, if you are already on them. I'm sure you should not be suffering to this extent, with no respite. I am in a lot of pain today and on 3rd day of flaring, but I know it will ease, and if not I will up my steroids. My lupus is not under control , as I have liver issues to be sorted, so it's not worth me calling the Drs. If you have no issues, then I would call your rheumy to sort it out. Don't be fobbed off. We wouldn't leave an animal like this.
I usually suffer pain if I am in some sort of flare. If that is the case regular painkillers regardless of strength dont seem to help at all. Its usually resolved through increasing whatever drug for lupus I am on at the time. Just to stem the flare. When the flare is controlled the pain is as well.
Family don't understand when you are ill. I live on my own but it doesn't stop my brother sneering at me because i have lupus and also had a kidney transplant. He would always say that i am always ill. we hardly speak at the moment but it is no lost ,as he never done nothing for me anyway. I was always there for him but he was nowhere to be seen when i was ill. Sometimes it is a blessing to live on your own ,as if you just wanted to be on your own there is no one to remind you that you are ill. Take care.
• in reply tosandwiches
"I was always there for him but he was nowhere to be seen when i was ill. Sometimes it is a blessing to live on your own ,as if you just wanted to be on your own there is no one to remind you that you are ill. Take care."
I agree with you wholeheartedly, sandwiches. x
I would hate to live on my own, although there are times when I feel frustrated that my partner doesn't respond in the way I would like, I really wouldn't be without them for the world. I'm home from work due to lupus and my partner works so I naturally do more of the daily chores, I have to ask for help when I need it as she doesn't automatically see what I see, i.e. pile of washing or ironing or a room that needs dusting. But hey, I know I'd be so lonely if she wasn't here as I love the time of day when she comes home from work and we get to talk and she'll rub my shoulders, or my frozen feet or whatever really.
I can see how people feel when they don't have understanding people around them, but lets not forget we can't always be that easy to be around, with our aches and pains, our many varied ailments, most of which aren't visible and we often look really well.
• in reply toSlowmo
"my partner works so I naturally do more of the daily chores, I have to ask for help when I need it as she doesn't automatically see what I see, i.e. pile of washing or ironing or a room that needs dusting. But hey, I know I'd be so lonely if she wasn't here as I love the time of day when she comes home from work and we get to talk and she'll rub my shoulders, or my frozen feet or whatever really. "
Hi Slowmo
Sounds like a role reversal - does your wife / partner earn more than you do? It seems a little unfair to you? x
Hi omega, not sure what's unfair? I happily take on more household chores as my partner works and I had to finish work due to SLE. No role reversal here we are both women and when I worked we shared the chores but I tend to do more now I'm home, I was just saying how I'd like her to notice that things need doing nit to be asked.,
As for salary I'm not sure what you're implying?
Hi Slowmo
No offense intended. I just got the impression that you are always picking up dirty dishes simply because she works more and possibly bring in more earning to the household. I often find that there are always one who's far more powerful and an underdog in relationships. I was just making the observation. Many of us do make a far more compromises in relationships due to our chronic illness. I did mine and wore a T-shirt. I actually didn't realize many of things I did until much later. x
There are swings and roundabouts to both living on your own or with a partner. If you are really unwell and on your own the only real backup is the intervention of the medical services. If you have a partner on hand this sometimes be avoided.
But if you are unwell and expected to look after others in addition to yourself it just doubles the problems.
A good loving and understanding partner is worth their weight in gold.
I was thinking what would I be like if the tables was turned I do hope I would be kind and understanding I am sure I would be it is in my nature. My mum was always complaining of pain I tried to help her but there was times she just wanted to be left alone. But then I didn't understand what was wrong with here because she had no positive diagnosis perhaps she had Fibromyalgia. or a Immune disorder.
• in reply toKedaco
Hi Kedaco
Hey, do you get enough support?
I got an impression that you were going through a bit of a rough patch wherever you are. Take care x
I think when you are on your own you are more likely to rest when you need to but if with others you almost automatically push yourself more.
If i am on my own and feel myself really flagging i will lie down and often sleep. But a few days ago i took a break with my fella and although really tired was pushing myself which culminated in me almost collapsing with fatigue and being forced to adopt the behaviour pattern that i would exercise if i was on my own. ie to rest.
By pushing myself i was then really tired for the next couple of days.
Its hard for a partner to adjust to being permanently with someone who cannot fully participate in activities.
I have allowed many friends/family members to disappear into the background as when they contact me the question is, "How are you". Rather than talking in a more regular fashion. ie in their minds i have become a patient/ill person and that is my defining feature in their minds.
Chronic conditions force changes on everyone.
"Its hard for a partner to adjust to being permanently with someone who cannot fully participate in activities.
I have allowed many friends/family members to disappear into the background as when they contact me the question is, "How are you". Rather than talking in a more regular fashion. ie in their minds i have become a patient/ill person and that is my defining feature in their minds.
Chronic conditions force changes on everyone."
Hi overnighthearingloss
Yes. 7/24 Relationships can be extremely tricky and adding a chronic condition to the mix can be far more complicated. Might be better to get a dog than a man, that's my take on this lately... 
x
overnighthearingloss• in reply to
Ah yeah but, a dog cant wash up, and needs walking, and if you have a hospital admission needs caring for.
Hi overnighthearingloss
ha ha...Indeedy 
xx We might need a robot then..lolol
It seems to me that as in everything else in life, nothing in life is so simple or straightforward. It's good if you have a very supportive partner (how lucky!) and it's true, being entirely on your own with this illness is no picnic either (mentioned by another poster earlier).
I have known others who are in a rubbish relationship (being treated very poorly by their partner) and everybody tells them to get out. But then it's much harder to get out when you have a chronic illness and you're not well. That's also a reality. x
I have the same thought, if I lived alone I could be more relaxed about trying to hide my daily symptoms from my partner. Well he went to Oahu to work for five weeks and guess what? It was awful! I had to take the ambulance to the ER twice because I was so sick I couldn't stand up, thought I must have COVID or something. I was scared and alone. It was a break from household chores like cooking for him, but I think in the long run it's better to have someone around when you are this ill, day after day to help each other out. It's not always easy emotionally, but that is probably true of all chronic illness. My Psych says "CHANGE YOUR THOUGHTS". Guess what, it works!
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