I don't know how to explain to my husband how I am feeling. He often asks me what the matter is and when I tell him I'm tired, he just says he is tired too or tells me to go to bed. He doesn't understand what this is doing to me. I have a job where I work 24 hours plus I run a dance school so hour wise I work full time if not more plus I have 5 children who I take care of inbetween my jobs. I do this whilst in pain, whilst fatigued, whilst working 7 days a week without complaining but he just doesn't seem to let me rest. He works really hard too, and I appreciate what he does. But today for example, I did two dance classes and three birthday parties yesterday. I am broken! But he keeps making snide remarks about the lounge being untidy and moans about having to make lunch for the children. So I am guilted into doing things that I am really not up to. How I can explain things to him. Part of me wants to give up and show him how this affects me, but other side of me can not give in because I know if I stop I will never get going again. Can anyone tell me how I can try to get him to understand what's going on? Any advice would be appreciated.
Getting Hubby to understand: I don't know how to... - LUPUS UK
Getting Hubby to understand
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I can't speak from the point of view of lupus (I have another autoimmune disorder) but do either of these help?
And can I be frank? I'm going to be anyway.
If you have an autoimmune disorder YOU have to do something to help manage the symptoms - one of which is fatigue. YOU are going to have to sit down and look at YOUR life and decide where YOUR priorities are. Since you are married and have children you will have to include them in the equation - but only YOU can do something about it in the first instance.
Unfortunately, when you are ill you can't have your cake and eat it and you have to make some compromises. And, equally unfortunately, so do your family.
But I'll tell you one thing: at your age I would have looked at your timetable and quailed. And I was fit and healthy! No-one can stretch themselves too thin, even when they are healthy. When they have a chronic illness it is even more impossible.
I have to agree. Good grief, that's a lot of stuff you have going on, Dotty! O_O I get it - bills and needing to earn a crust, but you've officially reached a wall, haven't you? You just can't keep going any further with your current workload. Something needs to give, or you will.
I had this same issue with my ex-husband - he didn't like that the house didn't look like a show home and I regularly got told his mother who had died from cancer had STILL been able to work and keep the house tidy, so what was my excuse?! When we split up and I wasn't there to do all the housework anymore, he changed his tune (he hadn't realised how much I actually did!).
So yes, you could just not do any of it, and show what happens when you hit the wall and can't go any further. You could show the Spoon Theory, you could even explain that there's a difference between 'tired' and the fatigue you have - I tried to explain to people that sometimes even chewing and reading a paragraph was too much work, and if you see me moving, it's because I'm on autopilot and I don't dare stop. But some people...don't get it. And that's something to weigh up as well.
I wish you clarity in your communication - and I hope you find a way to make the the light to come on
I know, but the thought of giving up teaching which is the only option fills me with horror. I keep active, but I pace myself and I have assistants to help with the more strenuous moves. I am not complaining about any of it, I just need to have the option to rest when I need to. I will just keep trying to get him to understand.
Sorry - but you can only have the option to rest when you need it if you make space for that. Surely you don't have to give it ALL up? Most mothers would be on their knees after doing one birthday party - you expect to do 3 and next day be able to do 2 teaching classes and not have some come back.
And actually - by the time I had done all that, I wouldn't have had the energy to be able to pay any attention to my husband. I'm not entirely surprised he is feeling neglected - because that is what he is saying. From what you say, you appear to put more emphasis on your teaching and business than you do on him and your children who you say you care for "inbetween".
Maybe I'm wrong - but that is the image you have created.
Please do not forget how important your health is and after 10 years of this I have learned rest is sometimes the best medicine but I am 54. I live in the United States not the UK and am now divorced but eventually I had to tell my husband to get up and do things himself. I had to tell him, he might be tired but I was sick.
Yes he is my ex husband but that came a few years later when I was not able to do all the things I did for 34 years. He decided he was not happy anymore.
This is not a temporary situation and something will give if you do not give yourself a break so I would sit down and find where you can find time to put you and your health first. I would also have a serious conversation with your husband about how you both will handle the situation when you no longer can do it all because probability is it is just a matter of time before you can't. I hope it is not your health that gives way.
Hugs Tammy
With Lupus you have a finite amount of energy. There is the spoons example to explain the Fatigue that comes with SLE You have 20 spoons daily, each task uses up 1 spoon or if it is strenuous more than one. When all the spoons have been used up that's what the fatigue of SLE is like. It is not tiredness that can be fixed by a rest. It is a symptom of the disease. I explained it to my friends as being run down like the batteries in a radio. My husband used to say he could see it happening. You need to make your husband understand that. and pace yourself. Good luck
You have to take a break when you can and if that means your living room is a mess so be it. If he is that bothered about the mess why is he not tidying up? (You both work)
You will have to have a frank talk with him and let him know how you feel and that taking a break is crucial or you will burn yourself out.
Hope you get it sorted and feel better soon x
Hello dotty2223,
Phew. I'm exhausted just reading your schedule!
In the past 18 months, I've gone from doing 3 part-time jobs to having to take ill health retirement. I now consider it a full day if I have managed to drive to the corner shop and back and cooked myself tea.
I guess I was "lucky" in that these changes were imposed on me. My boss and others around me could *see* how unwell I got with even the smallest exertion (sweating, shaking, wheezing, sickness, very impressive blue Raynaud's hands etc).
My guess would be that your husband has a big stake in you remaining strong and busy. He hasn't *seen* how unwell you feel - and he doesn't want to!
Financially, and practically - with the kids and the house - he can't imagine how the family can function without you working as hard as you do. Emotionally, too, he may feel quite frightened if he has to admit that you aren't the "rock" that keeps things going.
I wonder how it would go if you:
- decide what is a sensible, manageable, workload for you. Use a priority list eg 1. looking after the children 2. Time for recovery and management of my condition 3. 24 hour job...(for me, housework would come in at about number 37 on the list!) etc. Draw up a sensible weekly timetable that reflects the real priority that your own health and well being deserves.
- discuss this with your GP or rheumatologist, and then set up a joint appointment with your medic, you and your husband. The agenda will be that your medic will be *telling* you and your husband - for medical reasons - what is a sensible schedule for you. This will be what you have already discussed separately. Your medic's authority may get round your husband's resistance to you.
- failing this, just implement your new weekly timetable.
My main point is that I don't think we can change the way that others see our difficulties with words alone. They have to see or experience it for themselves, or else some other authority has to make them accept it (the doctor's or your own).
Good luck anyway - you deserve to be looked after too!
X
Oh dear, you are driving yourself hard and it sounds like you and your husband both have high expectations of your role!!!
I can see myself in your description and the same issues with my husband. It was only when I was hospitalised last summer and then had five months off work that the penny finally dropped with both of us that I had simply lost my superwoman over pants somewhere and it just isn't possible to do what I once did! ( I have three children, which isn't five I admit , but with a full time job and being lead in the department and a youth athlete son who trains six days a week 25 miles from home and completes all over the country,and a farming hubby who works all hours and simply isn't able to take over my roles and running around, I do empathise with your schedule!)
I am very debilitated by this disease at the moment but have returned to work, but have simply had to tell friends and family that I can no longer host big parties, run after everyone else and need frequent rests.
Getting my husband to actually go onto lupus uk web site and read up about the disease in detail helped. I think once he could see how swollen my joints get he now recognises how I struggle and accepts a little better that like an iceberg, he can only see I minute part of the disease.
Try and ask him if you can make an afternoon or something to sit down together to read about this diagnosis and explain you know it affects him too and need to plan a strategy with him to manage your symptoms better. You will burn out or have a serious exacerbation if you don't act on your instinct that you can't carry on without his support and acknowledgment of the situation. Tricky one, but my resistant hubby has taken 19 yrs to 'get it' and even now it can cause antagonism
When I am really off colour! May be show your hubby this site and let him see that your experience is not peculiar to you or him. We all feel for both of you. Good luck.
Dotty,
It seems you have a lot on your plate at the moment and you have my sincerest sympathy.
I am a retired, male psychiatric nurse with SLE and had similar problems, in relation to my wife understanding, the real affects SLE has on my body and my energy levels.
I was always very active and had to be doing something however, since getting SLE, all too often I don't have the energy to walk to the WC. or to feed myself: Some days are better than others, as I am sure you're aware.
It is a sad fact of life that blokes have a need to feel loved and to be the centre of attention at all times. Good communication is the secret to working this out. Once the kids are in bed, sit him down and explain exactly how you feel and how your condition affects you. Get him to read the fact sheets from Lupus UK or one of the patients and carer's guides so that he can see what it really means from YOUR point of view to have Lupus. I think Whisperit's suggestion to have a joint consultation with your Doctor is a good sensible idea; often, a professional's opinion carries a lot of weight with people.
In my own case, my wife had a very serious car accident in 1964 which left her in a coma and with a neurological weakness down one side. It was always her that was expected to need the care rather than me and to some degree, I suspect she was, at some level, a little jealous of all the attention I was getting due to my condition however, we sat down and talked it through. It wasn't easy but, we both had to be honest with each other. We both do what we can when we can but we both know we have limitations. It took a long time for us to accept that fact but once we did, things improved. If the house has a few bits on the carpet, we don't consider it to be a disaster and it won't bring the world to an end....we can clean it tomorrow, or the next day!
I agree that, if the state of the house bothers your husband so much, then perhaps he should clean it his self! There is no rule that states women have the monopoly on house cleaning!
There is a very good section in the Lupus Encyclopaedia about managing time and energy.
I hope you can resolve this issue and wish you and your family well remember: Communication is key....Good luck.
You definitely need to pace yourself. I certainly couldn't do all that you are doing but each of us are very different and only you know what your body can cope with but by your own admission you seem to be struggling and I understand why. I don't believe you are putting your work as priority In my opinion you are just trying to do everything and not admitting to yourself you can't and it isn't a easy thing to admit. You do need to seriously look at what things you can drop or leave for another day. Resting is important but if you are like me you feel guilty whilst laying there. I have had lupus for 25 years since the age of 18 and what really works for me is to set a time for rest. For example at 3/3.15 you probably set a time to pick up the kids. I'm sure there are time when you think you haven't got time lol but you wouldn't leave your kids at school so at that time you leave and pick them up. Well I do the same with rest. I don't wait to feel tired i set a time in the day and lay down setting an alarm. Sometimes I fall asleep sometimes I don't. I even lay sometimes thinking "I really don't have time for this" but until the alarm goes off I don't get up. This in its self allows the body to rest giving you that little bit more energy to perhaps have some quality time with your husband. It also gives you a sense of control back, you are resting when you decide to and because its like a routine appointment with your sofa it becomes guilt free.
There is a dvd that you could get your husband to watch. People are more likely to watch something than troll through loads of written text.
Good luck - don't be too hard on yourself X
Hi Dotty, Is it possible to pay someone to do your housework. I have someone once a week for two and a half hours and I pay £20, I can no longer do the garden and my husband and boys doesn't like gardening so I pay a gardener to do the garden.
At the weekends the boys have to clean their own rooms and bathroom. Today my son is cooking the dinner, I have taught both my sons to cook and when thy were at school the made their own sandwiches.
My husband also cooks now and helps a lot even though he has a stressful job but it took a few years after diagnosis for him to start helping. The lupus has damaged my lungs and I now have ambulatory oxygen which has changed everyone's attitude towards me now they see me with the oxygen. I don't have comments about how well I look anymore and why don't you do more.
Praying your husband and children will be more understanding and you will learn to listen to your body and rest as much as possible.
Ps. I was working partite when I was given the diagnosis and I had to take early ill health retirement.
Hi Dotty, I'm not in your exact situation as I am working and single with 3 kids. I know how very very difficult it is to keep going when the fatigue is just dragging you down all the time. I was petrified about not being able to continue to pay my bills and have the same quality of life but then I realised I was driving myself into the ground and that was impacting on our lives more than anything. I was irritable and snappy and used my energy for work and really the kids got the raw end of the deal.
So I set about creating a new normal whereby I could still pay the bills but had less stress and was able to rest and pace myself. This has been the turning point (with the right mix of drugs) to managing a bit better and being able to go out again with the kids. I started chatting about how I was feeling to my family and friends, explained why I couldn't go out at night or do more than one activity a day. I got the kids helping with things like changing their bed sheets even though the 2 youngest are just 10 and 6 and one visually impaired with multiple disabilities. I told work that sometimes I might not cope so well and changed my hours when I was really fatigued. My manager was extremely supportive and still is with this. I also bulk cook, get in some convenience foods,didn't stress the odd night if we just had sandwiches,crisps and yoghurt for dinner and spent time with the kids doing things that didn't take too much energy but were still fun and engaging. I got a dog walker when the going was tough even though I love walking my dogs but I needed to take the pressure off, I got my shopping delivered at home or did a click and collect...I could go on, I was always referred to by my friends as super woman because I was a working single parent with 3 kids,multiple dogs with a large outside space to manage. I am very happy not to be known as that anymore because I just couldn't do it all anymore I was just too tired.
So the point of my ramblings? Talk to your lovely husband and tell him how you are truly feeling, ask him how he feels and find a new normal together. I wish you all the best with it
Can you not take him to your GP or Consultant to hear what you are suffering? If not find a good explanation of Lupus (this website?) would explain, so print it off. Perhaps under feb topic - Lupus and relationships. I explained to my husband that all my bones ached as did my muscles, teeth and head! He finally got the message when I didn't get out of bed one day. Good luck - keep us posted.
Hi dotty2203 ,
It looks as though you've received loads of great support and advice from the community here. Have you considered going along to a support group meeting with your husband so that he can hear the experiences of other people with lupus and get a better understanding of how the disease can affect people? We do have a wide range of publications (lupusuk.org.uk/publications/) which we can provide free of charge too. We have a booklet called 'Caring for someone with lupus' which may be of interest at lupusuk.org.uk/wp-content/u.... If you need physical copies of any of these, please just send me a private message or email paul@lupusuk.org.uk with your name and address.
We also have a DVD which features interviews with doctors, people with lupus and their carers. It can be helpful for improving understanding about the impact of lupus. You can learn more about this at lupusuk.org.uk/newly-diagno...
No support
Feel so alone :-/
Family just don't understand ....
Just wondering how you explain your illness to people...
