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Pollianna
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Discussion Starter #1
I thought I was coping ok with the thought of living with lupus for the rest of my life but things just keep getting worse. I have been ill for about 10yrs I think, maybe longer but milder. I haven't been quite right for a long time. I'm terribly depressed at the moment. My whole life seems to be falling apart.

My boyfriend died over 10yrs ago 8 months after my Mother leaving me with no family except my daughter. Her Father left the country , we haven't seen him since. I started to show symptoms for two years of what we know now is Lupus. I had a car crash, instantly couldn't walk, spinal injury. I was bedridden for 18months. I can't actually believe I didn't die in that bed at times I could barely lift my head from the pillow. My daughter was left in my care and nominated as my primary carer at 11. It was all so difficult, so painful for both of us. I took so long to recover but eventually managed to start working as a carer and with graded excercise and pacing increased my workload. Over the years my daughter became increasingly difficult despite me taking her to family therapy. She got in with a rough crowd,went off the rails and started drinking and bullying me when I tried to reign her in . I became so unwell after each of her aggressive outbursts that in November I had to ask her to leave. She is ok, comes over for dinner but refuses to acknowledge my illness. I can't talk about it and feel obliged to almost perform as "well' for her. I know it's worrying for her too but we have very little emotional connection which hurts me greatly.

I work currently from 10am-9pm every day midweek and from 10-5 saturday to meet the bills but this is too much. I raise funds for charity in the afternoon and evening and do carework for the elderly in the mornings. I am not coping with the workload. I have been in flare since October. I'm in constant pain and can't feel my legs at times. The pressure is on at work due to the recession and we are all under a microscope and picked up on any error ( not reading the script word for word) as the bosses are all panicking pointing the finger at each other because of course it's not working as it should, were in the middle.

I almost cried the other night when I was pulled up in the middle of a shift at 8pm and told off for some minor error. Last month I was promoted to senior caller as my results are extremely good. Now all of our calls are recorded I am almost terrified of making a mistake I am so depressed. I can't do anything after work but come home and try to rest. Sometimes I'm too tired to cook. I have one friend in the world who has stuck by me even tho I can't go out much. I haven't the energy to keep up with everyone.

It feels like all of the struggling will never be over. I am so alone :(
 

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Pollyana,

First and foremost, I want you to know, you are not alone. I have and continue to fight body and mind numbing depression over where I find myself with my health. I would venture a guess that many if not all of us at one time or another have had struggles with depression. Does that make yours that much less important, no,

The loss of your life the way you knew it or the way you expected it to be, is much like a death in the family. You go thru the five stages of grief, denial, anger, bargaining,depression and acceptance. It has been studied many times over that you can go back and forth thru these stages many times. What is important is that you get some help. You need to reassured that you are still important, loved and not a bother. You need to find you again. While I am sure that your life has been difficult with everything that you have been thru, it doesn't mean that you need to continue to have these challenges. It is important that you realize that you are quite special. It is important that you speak to your Rheumy about what you are personally going thru and how it is effecting you. Sometimes it is a horrible circle that we go thru. We do that happy and sad dance continually. Unfortunately sometimes, our dance card gets stuck on focusing on the negative. Please contact your physician about what is going on. Let him get you some antidepressants and possible get some private or even group counciling. The quicker the better. There is no need for you to carry your heavy burden by yourself.

As for your daughter, you already know what she needs, but as the saying go, you can lead a horse to water but you cannot make it drink. Same thing here, you can tell her or take her to counciling but that doesn't necessarily mean she will take advantage of it. Your daughter is probably going thru the death stages as well. You say that you were in a bad car accident several years ago, when she was younger and at the delicate stage of growing up. By all regards, she lost her mom in that car accident. Her mom was no longer the way she remember or imagined that she would be. Then for someone to put her in basic charge of you, completely put a heavy burden on her, not that that is your fault at all. But your daughter had to go from child to adult practically over night. Now, there is no way at that age that she wouldn't help you. Up until then you guys were probably a team. Now, she not only had to take care of herself but you as well. I question that she feels somewhat responsible for your accident. Anyway, you guys got thru that and then went right into her teen years which are difficult under normal circumstannces. Add in your health concerns and she has been carrying the weight on her shoulders. If anyone could talk her into therapy, it would be you and maybe the best way to do so is by example. Let her see you going to therapy and that it is helping you deal with things and maybe she will follow suit. One other thought would be, invite her over for a special supper and then let her know that she is the guest on honor. Compliment her on just how well she has done with raising herself and aiding in your recovery. I would also let her know that she is no longer responsible for you. Maybe if you verbally tell her, it will give her some relief and then she will be able to take care of herself mentally. Her acting out is her way of dealing with all the pressures she has had to deal with to this point.

You state that you don't trreat yourself very often, it is time to start. Call your friend over for coffee or go out for ice cream or something and them know how much you thank them for everything they have done thus far. I am sure they are very active in your health both physically and emotionally. I don't know your financial state, but you just need to find a way to cut back and make time for you. While you need to have money, you need your health worse. Look to see if there is anyway you can cut back at home, somewhere. Everyone in your life needs to know that the cannot depend on you for everything. It sounds like your employer puts alot on you.

You may not want to take any of my suggestions, or maybe you do. If you want to talk to someone first or whatever. I would just plead that you talk. We are here as you know or pick up the phone and call someone. Shoot, I would give you my number to call if I thought that would give you another outlet to vent. But most importantly, talk to your physician and get them on your team and let them help fight for you. You are important and by all means, worth having around. We all love you as we love each other. Not everyday spells like roses, some days it smells like the fertilizer, we just sometimes need some help to get thru those bad days. Let us know how you are doing. Don't think huge, just take babysteps.


Nancy
 

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Pollianna,
Please, at the moment call a halt to the Charity work and fundraising. It may fill a void but it also seems to rob you of energy. I could not manage even one day of your schedule!

Things were hard on your Daughter, that is a pity. However, many people manage to be successful despite appalling problems. In order to help her, you need some help yourself. Is there one thing, even something very tiny which you could put into place straight away,so you know you are going the right way.
We are here, and with you all the way.

x Lola

PS. My Daughter hit a rough patch too, not as serious as yours, but it was a bit shocking at the time. She is fine now.
 

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Pollianna
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Discussion Starter #4
Hi, some great insights, thank you both. I am trying to find ways of cutting back work. I may cut my hours but then I will need to increase my caring work but of course it's hard to sit without making the rent knowing that there's hours I can work even if I can't do anything else. I am off today and was yesterday with a terrible flu, a Godsend !!

I have no one to help should I fail to make the rent or a bill. It's hard to imagine I guess how someone can have no relatives at all. My friend is limited in her time due to family commitments so in reality I am alone.

My daughter knows deep down how difficult she was and now she has moved out is no longer destroying herself to punish me for being ill. I miss her and am finding living alone a great strain but should I ask her to return she would just regress. It's better for her to live apart from me. It's all such a shame. I just can't see any light at the end of the tunnel at the moment
 

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Pollianna
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Discussion Starter #5
Ohh Lola, I should say my Charity fund traising is my paid employment
 

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Dont ever feel alone...not when you have this wonderful board and wonderful people to support you...sending a big hug x x
 

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Sorry Pollianna, I must have been careless reading your original post.
It is far from easy for you and I think you should be proud at the fact that you get through each month.
x Lola
 

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Pollianna
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Discussion Starter #8
I understood Lola, I am not sure I get through lol

My cold is easing and my mood is lifting a bit but the lupus butterfly is back now that my immune system isn't tied up Tut!! :rollseyes:
I have made the decision to take on more care work and do the minimum at the charity fundraising job. It still means working every dayand eve till 9 and 10-5 Saturdays but it's better. I realise it's draining me in a way that's much harder on me than any physical job could. I went to one of my clients today to do the shopping I couldn't do yesterday. He was so wonderful it made me feel the difference. My clients appreciate every little thing I do for them. he gave me luxury napkins so my nose won't get sore, bannanas and honey, bless him lol.I work so hard at the charity place, people have been there for 4 yrs and not been promoted and I did it in 6 months. I am so conciensious, never late, only off when I can't physically move. I realise today if they don't understand that I am doing the best I can then more fool them.

Thank you so much for your friendship and support everyone xx
 

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Dear Pollianna

I read your post yesterday but felt so sad for you that I didnt trust myself to reply. You have had such a lot to contend with and you sounded so alone. :hug: I am so glad to hear that you have a good friend who is standing by you. One friend like that is worth their weight in gold. I would be lost if it wasnt for a good friend or two.

What a lovely gentleman your client is :) Its those sweet little moments in life that make us want to go on. I wish you many more of them.

From what you wrote I guess your daughter must be about 21 years at this stage? Forgive me if I am wrong. I too had a difficult journey with my daughter at times. I have one daughter and parented alone. If its any consolation to you we now have a very good relationship borne out of her maturity (and my resistance at strangling her at times :hehe:) I reckon. If I had a wish it would be that all daughters should suddenly advance to their mid and late 20's :p. Im sure your daughter is a wonderful human being and I hope that at some stage soon you can both resolve your differences. It may not be a huge defining moment though so dont expect that. Sometimes its just that you both realise you have come to a place where you have respect for each other and acknowledgement of your individual struggles and directions in life.

You are not responsible for the turn in your health. Neither is your daughter. C'est la vie. Maturity brings an acceptance of what life brings to us.

Please know that this forum is always open to you to vent or air your feelings and Im glad you choose to write them down. I have no doubt that your post will have touched many members, even if they didnt or couldnt reply.

If you think that you are heading into a major depression, please take your courage in your hands and talk to your GP. This disease takes its toll at times and sometimes we need help to re-balance our systems. You may need some medication or therapy which can take the edge of your anxieties and make things more bearable.

Take good care of yourself Pollianna. You only have one life and you deserve it to be the best you can make it.

Lots of love
Joan:rose:
 

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Pollianna
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Discussion Starter #11
Thank you Joan, she's only 19. I guess I am bereft again at the moment as she's gone under such awful circumstances. When you battle through so much grief and disability only to find yourself with a lifelong illness and alone I think I have broken a little. My brother also took his life when I was 21 and my dad died long ago. I kept thinking if I just get through this bit.... but loss seems to have just kept coming thick and fast.

She's coming over for tea again tomorrow and she will sleep over. I do try to spoil her whilst she's here and she invariably leaves with half of the content of my fridge. I have been trying to fix things between us . I started work again 6 yrs ago so she's not felt responsible towards me for an awful long time. I guess me getting better was almost as hard for her as me getting well. I can't believe that the Uk offers such little support for families with disability.

I know when I am depressed Joan but anti depressants will not help me. I tried that when my boyfriend died and it only served to delay my grieving process. I might feel better when I have seen Dr D'Cruz at the London Lupus centre again and start some treatment. I think the only way forward for me now is through.

Pauline xx
 

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Hi again Pauline

Glad you posted again. I hope tomorrow is a good day for you both. I can so empathise with your comment about 'leaving with half of the contents of the fridge' :hehe: Isnt that what we do as mothers? ;) For such a long time after she left home I still found myself buying 'goodies' that I know she would like to eat because she may call down tomorrow. ;) What a great support you are to your daughter.:)

Coincidentally my daughter's father also died very young (killed in a road traffic accident) and I chose to work my own way through it as well. It was very tough but Im glad I arrived at the other end of the road relatively sane. It was a different time though and Im not so sure I would have the same strength now! Still, Im glad that I survived it and moved on with my life.

Its important that we know our limits and its good that you know yours and how much you can cope with. Thats the important thing - believing in yourself and your ability to cope at the time.

I hope you have a lovely day tomorrow and keep an eye on that fridge!

Luv n stuff
Joan:rose:
 

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Pollianna
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Discussion Starter #13
Aww Joan, sorry you lost your Father too. I'ts hard growing up without that special man in your ife. My brother kind of took over the position so when I lost him it was like loosing another Father.

On a lighter note, had a call from the Dx and she's been shopping. She's very proudly told me that she went out but didn't get drunk, didn't spend all of her money. she's put everything I have been trying to instill in her into place since she left. I'm very proud of the way she's turning herself around. My cold is drying up and I'm felling brighter than I have in a couple of weeks

Thank you all so much for your kindness xxP
 

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Pollianna,
Glad your Daughter is doing well at the moment. Even having better control of her money will really help her self esteem.

When do you go to London Bridge? I have had to make a Private appt. there myself as things are not right for me at the moment. Usually I muddle through with NHS appts. and my own common sense but this time I have run out of luck.

You sound so much more positive than you did. We are all still here for you,
x Lola
 

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Pollianna
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Discussion Starter #15
Hi Lola, I'm seeing Dr D'Cruz on 26th Feb. he's got another set of bloods to look at, he said these ones are more indepth. I didn't really get any more info out of him. I wish I had asked him so many things. He said that I will see him next time and he will put me on antimalarials and that's all I know.

Am feeling brighter in myself the cold is going tho the pains are back with a vengence. My knee is constantly burning and there's pain in my spine where my injury was but it's easier to deal with than depression. had a nice day with my daughter who's sleeping over. Hopefully things are on the up.

Sorry your struggling, are you seeing Dr D'cruz? xxP
 

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This disease is so isolating and tears you down a little at a time. I used to do a lot of things with friends and now find that at times it takes too much to lift the phone to connect. My kids are both pretty tough and my 15yo son has been in trouble. So often I feel like he takes his anger out on me because I try to maintain expectations for him. Somedays it is hard to just take today for today and try not to borrow trouble by looking at tomorrow. I pay the bills I can today and hope that I can keep juggling things. It's scary!

I can't even immaging having to work that many hours!

Amy
 

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Pollianna
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Discussion Starter #17
Hard for you Amy, reigning them in. I don't think it matters if they are boys or girls. We have been snowed in today as I am too scared to drive in 8" of snow. I felt hopeless as my daughter is looking to me to rescue us but I am not a man and daren't take the chance and drive in it. I think that's the problem, she's looking for a hero in me and I am too physically weak to be one....


Spine is so painful and shows signs of getting worse, feeling really worried about loosing my job, not rational tho. I know I am feeling irrational and I know I am hitting a major depression. Just have to try and be mindful, watch my reactions and keep myhead down at work. What a way to live
 
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