Feel so alone.

[Terrier_Lady]

Hi everyone,

I read all your posts quite often, I find it does help to see others feeling the same as I do but I haven't really posted before. After the last few years of drastically going downhill I was diagnosed with lupus. I'm having such a hard time as I'm trying to work, adjust to this new life, and let go of the old one. I used to be a very active person, and am a hair stylist. I'm down to working 3 days per week and by the end of each day am in excruciating pain, my joints are swollen, I'm exhausted, and because it seems I never fully get to recover before starting again am constantly going up and down with flair ups. I go to work and then am so exhausted and in so much pain that I spend all of my weekend sleeping and trying to recover. It's so hard for me because I feel like no one understands, I don't think you really can until you end up with something like this. I'm more of a buck up and move on kind of a person, so I don't talk about it much, of course to my husband and family some but they can't fully understand. Today my mum came to see me at work and asked how I was. In all honesty I didn't want to stand up anymore for the day because my body was hurting and I was tired. I said fine but not great and got the dreaded response of "well just keep a positive attitude about it". I understand this and the need to be positive, I try to be positive all of my days but then sometimes I have days like today when I'm just tired of fighting my body all the time and just want some relief. I want to be normal again, be able to enjoy what used to be my hobbies, not just work, be in pain, and need rest. Not only is the disease effecting my body but the meds are too, I feel so gross, and my hair is falling out, I know it's only hair but I don't want to lose it too. I'm just feeling so discouraged right now, I miss the old me and don't want to have to fight everyday for the rest of my life. It's been almost 2 years now of feeling like I'm in a constant flair up, each time I tell my docs they change or increase meds, I start to feel better but as soon as I try to resume my normal activities I start to go downhill again. This last time we had to do a EKG, and am waiting for a 24 hour heart monitor to see if it's effecting my heart so they can decide if they need to change my treatment plan. I guess I just needed someone to talk to today, sorry for groaning about everything. My hubby is wonderful amd tries so hard to help me but I try not to complain too much to him as I know it stresses him out as well. And as he is the only one who has seen me when I'm at my worst no one else gets it. I put on a brave face and continue on,husband tells me to be honest with people, but I want to be as normal as I can be, don't want to talk about it with everyone, and I also feel a lot of people don't really want to know, as long as you smile and act fine that's all that matters, of course some of this I think is due to the profession I'm in. Thanks for listening and thank you all for sharing your stories, it really does help knowing I'm not the only one with these feelings.

[Natura]

Terrier lady.....I am so sorry about your pain. I very much understand when you say no one wants to hear how you really feel. I don't say much anymore because of that. I can only hope and send prayers your way that you can find help with your exhaustion. Is there any way you can afford to stop working? I know it is so hard today and staying home like I do isn't always easy either. Maybe part time, cutting your hours standing would help. I am very reluctant to work in retail because standing a lot is hard. Can you sit between appts.? I hope you can find a way to adjust your lifestyle and work to relieve some of your pain. Maybe someone has a suggestion on this site.....feel better

[Terrier_Lady in reply to Natura]

Thanks Natura for your reply and I greatly appreciate the prayers. You can never have too many of those. Yes we are thinking that me quitting work is going to eventually be inevitable. I have already cut back to only 3 days a week and it's currently taking me most of the 4 off to recover each week, thinking its not worth working if the rest of the time is miserable as a result. Just trying to hang in there long enough to get things settled and hopefully be able to live comfortably on one income. Because I don't want that to be a stress either, not just for me but also for the husband. I know he has a lot more stress since my illness, always wanting to make it better but not knowing how. That's so nice that you have been able to not be working I imagine retail would be very hard with this sort of illness, I know the standing really makes everything hurt and swell for me. And I would think the time at home is good to be able to figure out how to try and manage things better. Anywas I truly do appreciate the support and you taking the time to listen and reply. I will pray for your health as well!

[Natura in reply to Terrier_Lady]

Terrier....we really can't afford for me to not work. Why I am looking for something now. I pick up and drop off my girls at school too. We don't get a bus. More stress to work around kids schedule. Not easy. Have to go back to work as the stress is worse being home and struggling. I worry about my husband too. He is very stressed working as a carpenter for 29 years. His body is shot physically. Want to move to a quieter place with less stress, but trying to get kids thru school first. Not easy. I pray a lot, but have not gotten any answers yet...good luck to you and your family...

[misty14]

Hi terrier lady

So sorry to read about your health problems and how it's making you feel. Lupus is such a cruel illness as we can look well on the outside but feel so ill on the inside and be struggling to cope!. I learn't very early on not to be totally honest with friends as to how I was in order to keep them as friends but that is hard to do and lately being more ill I've had to be more honest and luckily have found they still want to be friends!.

Can I make a practical suggestion?. Go to your local Citizens Advice bureau who can run a benefits check to see what help you and your husband could get if you decide to give up hairdressing. They will also help with form-filling as these have to be done in a certain way to maximise chances of success. You could even re- train when your health is better or to start off do a voluntary job to meet people and test out how you are!. It's tough having to adjust but it could help your health in the longer term!. Good luck with the heart tests , hope your new treatment plan helps you. Funnily enough I'm waiting for a new plan from my doctors!.X

[bevjane74]

There's a video my friend sent me to help me understand what was happening to me on a day to day basis, I suffered with flares ups for 28 years just thinking these days are what people meant by off days until I developed a dvt then all the diagnosis followed, to be honest it was a relief but understanding it and explaining it to others seemed near impossible, then a friend of mine who suffers from fibromyalgia sent me a video and I just now play that for people and it does, most of the time, make them understand a bit better as to what's going on and why you're not always on top form it also helped me organise my time a lot better now I understand it a bit more

In YouTube u just type in "spoons video lupus" the top video is the one to pick and it really does help

Hope it helps you too

[Terrier_Lady in reply to bevjane74]

Thank you for sharing this video with me! It really is a great analogy of what it is like going thru everyday. Think anyone struggling with this should take a look at it. I can't wait to show if to my hubby and family.

[Wendy39]

Hello Terrier Lady. Sorry to hear you are feeling down today. This site is a life line to me too. I often read peoples posts, when I'm in bed at night. I might not always post or comment but it makes me feel better and not so alone. I have been in a flare since January 2013 (diagnosed in November) and just coming out the other side. I was working 4 days a week until my Dad died in January this year and I had to take 3 weeks off, it was all too much. I then went back 3 days a week. I work in a school as a Teaching Assistant. In September I am reducing again to 2 1/2 days. I struggle to cope on my working days. I have 3 children aged 6,9 and 10. I often think "why am I working at all?" I get so tired. But my job suits having a young family and I love it - I won't find anything else better, so not ready to give on just yet. But it is hard. Can you cut your hours to 2 days week? Maybe two days with a day off in between to pace yourself a little better? I have Thursday and Friday off so that I can do the food shop and nap and then try to enjoy my weekend with my husband and children. Getting advice from the CAB is a great idea too. Good luck to you! I hope a solution comes up quickly for you. You are not alone. Wendy

[Hidden]

I feel for you. I think it is a cruel and selfish disease that sucks the spirit out of everyone suffering. Easy to say "stay positive" but doing do seems a marathon effort when so much time is devoted to coping. I too work four days and spend my weekends resting to prepare for following week. I am in an office but still find it exhausting. I have a "smile" permanently etched on my face and a "good thanks" response to any how are you questions as I got fed up with all the suggestions on how to improve my energy/joint pain/medication usage.....you get the drift haha. Lots of "experts" out there.

All I can say is I understand how you feel. Today may be a horrible day but tomorrow may not. It is a rollercoaster that we didnt ask to ride. Take care

[happyp]

So many hugs to you. Recently I've got to the point where I just feel fed up with waking everyday in pain . I'm tired of it. I just want to be healthy and have energy, the good days are few and far between. So no advice but I found a work at home job, steady 12 hours a week and 8 pound an hour enough to get us by. On bad days my work is less than great, but I can do those hours Whenever I want Monday to Friday., I try to do 3 hours Mon to Thursday and take three days off. So that's an option maybe? I think you'd feel better if you weren't on your feet all day.

[Chapter]

Hi Terrier_Lady, I don't know if you have tried sitting at work but it might help you.

I once had a wonderful hairdresser, he gave me the best cuts I have ever had, and I am 60. He had won awards in the big city for his work and designed hair cuts for the head - didn't just cut your hair, it was very hard when he gave up his shop, a lot of upset ladies. And you ask, what does this have to do with me? Well, when he first came to our town (he was raised there and after he had built his career he came back for a rest) he was very professional, talked of course, but only to his client and not everyone in the room. I could often see that his back was bothering him, after about a year he would pull up a stool and sit while he waited for colours or whatever. Eventually, it got to be "Bryce's stool", you know the little three legged roll-abouts. He was a tall man, he would put your chair down as low as it could go and did everything from that stool. I asked him if he preferred that to standing, and he said it made it so he could get through the day. I found it to be very comfortable for me as a client - he was level with you - not leaning over all the time and it made his days much easier. He wished he had thought of it sooner because he eventually had to quit as his body couldn't take it anymore. I know that is not a nice ending to my story but I think you can do your job sitting on a stool, it would be so much easier on your back and your legs, and when you do have a conversation with a client it is more private, everyone doesn't have to hear how you or your client are feeling today. Of course there will be a short adjustment period while you learn how to drive it but then I think you will like it, Bryce did.

[Terrier_Lady]

Thank you everyone for your suggestions and being so kind to take the time to encourage me. It's been a very difficult couple of years and it seems like the good days are few and far inbetween. I'm always so greatful when they come but feel so discouraged when they are gone. I know you all understand this and it's nice having a safe place to express how I'm feeling. I will look into benefits more, just been hard finding the energy to do it and then I think I'm afraid of the fight in order to get them. Just so many horror stories about what they put you through. Have thought about trying to find something a few hours a week to do from home just to supplement the lost income, I guess I'm just a little bit in the waiting stage, hoping something turns up or benefits come thru and just trying to hang in there through the process. Until then I think a hair dressing stool is great suggestion and will try it, another part of my problem is learning to tell people no. Both in my personal and professional life when people ask it's hard to tell them I can't. Right now I'm trying to figure out how to tell a few clients I can't take them anymore as I don't have the time and can't afford what it is doing to me to stay after working hours in order to get them done. It is quite a process this leaning to live a new way. I greatly appreciate the time all of you gave me and hope you all feel better and get the answers you are looking for as well.

[Lupylass]

Hello there

I'm so sorry for what you're going through. Everyone had already offered you great advice.

All I can add is that, whilst you are still not in a place where your disease is under control, you really must do everything you can to listen to your body. Do as little work as you can afford to, but I fully understand that in time you may feel better and want to increase your hours, so want to keep your options open. But right now, you need to focus on getting better.

You've already talked about saying no. I found that a big lesson. One that I still find difficult. I feel guilty when I say no. But I feel physically well by saying no. That's more important. Good friends will understand.

When you start to feel better, try not to do too much too soon. Little steps. You will get there. Keep talking to your doctors and agree what's working and what's not.

It's a long roller coaster ride. But you'll get there. X