Visitor that doesn't understand my ill.

[ijeasike]

My mum's friend visited from Africa, on the week i feel washed out. I have had a tough few weeks and i have tried to rest but i have been having hospital appointments for 3 days in a stretch. I had an infusion on thursday and rushed off for a renal appointment, got back rushed out to church for the youth group meeting ( getting reasy for Christmas fair). Then my 12.am my mum friend arrived and i had 2 more appointment the next day.

I woke up in the morning practically dragging myself out of bed. But when i got home in the evening my mum's friend asked me to help her do some shopping online( she would take them back to africa to sell). We did the shopping which took alot of time and i was in agony. She then said we should sleep and start the next day. I knew i would not be able to function the next day, so i mustered all the energy i had and finished the shopping that night. I normally rest for a couple of day after my infusion, i couldn't this time.

I have been in bed all day, but she is trying to get me to check something in the internet, trying to convince my mum if we can drive to Manchester to do some shopping and i have told my mum unfortunately i cant go no where. I feel very weak, fiverish and just unwell. I have a busy Wednesday, thursday, friday and Saturday. These are long planned commitment.

Although i have seen that she trys to empathise about my constant staying in bed but i seem to see through her. She may feel am lazy and letting my mum do everything. I have asked my mum to stop and rest because she is running herself down. I think she feels obliged because her friend brought some african food stuff for us.

I would have hoped to do more but i have learnt to know my limits with lupus. At this point my body is not moving atall. I have to build up energy for my midweek - weekend appointment this week.

I have to live with the fact that people will not understand my condition. Because it is not known to them all they know that are serious illness is cancer. I know certainly that i will be discussed when she gets back. I don't care because i cant do anything about it.

I really wish i could go see Thor in the cinema 2mro for £3.99. That is what i feel like doing. Unfortunately i have no friends to whisk me away 2mro. I will probably try and study . Thanks guys. Take care and God bless.

Regards

Ijeasike xxx

[Pipido36]

Hi,

I understand what you going through. With me it's my close relatives who came from Africa and went back and told everyone that I was lazy and I pretend that I'm in pain and ill. It's really hard to explain to them especially if they dont know the disease. As you said, to them cancer is life threatening but not other diseases. I think they need to be made aware of these diseases so they do not judge us.

Anyway keep on keeping on. Rest is most important to us so we can cope. As for friends, I dont have any, they have all decided to do their own thing and not involve me. Luckily I have my two daughters who i adore very much who are my carers as well as my best friends.!!

Take care xx

[Lupiknits in reply to Pipido36]

Get some leaflets from lupus uk lupusuk.org.uk

Give them to read or put them in a prominent place. This may help her to understand better.

[Pipido36 in reply to Lupiknits]

Hi Lupiknits

Thank you for informing. I have given them leaflets and even invited them to attend one of our group meetings but still they think " I am not that sick". So just thought I have to leave them in their own world and I stay in mine! Lol x

[Leave-me-alone]

Totally understand how you feel. I feel the same. People always say you don't look sick. When I am tried they say just do more exercise. Like I am the laziest person on earth. Doesn't matter how much I explain is not me is lupus. They carry on. The only person who under me is my sister because she see what happens when I have a flarup. I think even my husband thinks I play up to my symptoms.

[ijeasike in reply to Leave-me-alone]

I can remember a couple of people told me that i should be moving around, try not to stay indoor so that i don't become a vegetable (this was statement they made directly to my face as i was just getting in 4rm admission in the hospital on my first lupus breakdown). They are just ignorant.

[weathervane]

Take to your bed and demand that she looks after you ! Seriously I totally understand what you mean , unless you have a condition that is outwardly obvious some people think there must be nothing with you . You should not feel pressure to go chasing after someone when you are feeling so low so stay strong. Best wishes xx

[misty14]

Hi Ijeaslike

Can so identify with your post and how difficult it is with these illnesses convincing relatives/ friends that we're I'll when we look so well etc!. Lupiknits' idea is a great one and all I can add is you just do whatever you have to do to get thru such a busy week!. Never mind what others think, they don't have to live with consequences like we do!. Good luck with all your appointments. They're wearing enough to cope with without visitors on top!. Hope she's not staying too long!. X

[1sam]

We don't need to convince anyone that we have a disease. This is not a matter of belief.

I promised myself that I don't have to smile and pretend everything is fine when I feel sick/tired/in pain. No more.

If someone doesn't understand is not my problem.

Be gentle and considerate with yourself first.

[Cann]

It sounds like you are doing too much and need to rest more or at least have time out for yourself.

Sometimes it is ok to say 'NO', and put yourself first.

Why not go to the cinema by yourself tomorrow and relax and forget about others for a while - you deserve it and don't feel guilty about it - that just makes your health worse.

I had to learn to say no, like the rest of us, for if we don't look after ourselves, we can't help anyone else.

Show them the website and tell them to read it all - about lupus and all the other people who suffer like you. If they don't believe you, tough, they aren't worth bothering with - family, friends or whoever. I am only talking through experience of similar myself.

Look after yourself, you are far from alone.

[ijeasike in reply to Cann]

Thank u

[katidid]

I understand. For years I have felt that my husbands side of the family has ZERO clue about my illness. They never provide support (not even the occasional phone call of support or checking on me) and yet his sister uses our house as a crash pad for her mini vacations. Leaves a mess and this last visit brought a nasty virus into the house. Everyone knows that I am on three immune suppressants and to stay out of the house and away from me if they are very sick. She lied to us about how long she had been sick, how bad it was and coughed all over the place WITHOUTH COVERING HER MOUTH!!! First, eeewww, second seriously?? I called her out on it. Needless to say I got sick which also caused s flare. 10 days in bed missing work. Then my husband got it. Sick enough to get lung X-rays.

Some people just don’t get it and don’t take it seriously because it doesn’t effect them directly. Hubby and I agree that she’ll never stay here again.

[Treetop33 in reply to katidid]

Much sympathies - she sounds awfully selfish, and us Lupies can't be doing with that.

[ijeasike in reply to Treetop33]

She is a good person but unfortunately those ignorant of the disease lupus cant sincerely empathise with you.

[Cann]

Good you agree that you both need to take care of yourselves. There will always be those who use others and abuse hospitality even family members, but they need to learn, too.