Is feeling overwhelmed and struggling to cope day to day part of lupus/polymyositis or likely to subside over time?

[Renu]

Hi I have CTD (SLE/polymyositis) and was diagnosed 2 years ago. I have recently joined Lupus UK and am new to this site aswell. I am positive, and try my best to fight lupus and cope with it. I swim regularly to stay active and maintain muscle strength. Infact swimming for me is my coping mechanism. However, alot of days are a real struggle in terms of energy levels, mobility struggles, feeling unable to cope with pressures of daily life with a young family (children aged 5 and 8). I am hoping things get better overtime. I have just come off steroids after two years (whippee) and am now on hydroxicholoriquine and aziothioprine. I feel on edge alot of the time because I get shattered as the day goes on but whether the anxiety/inability to cope is likely to subside I don't know. I wonder if feeling like this is actually due to lupus or reacting to and learning to live with this overwhelming illness. Could be both. Any thoughts please? I try to pace myself, and to get rest while kids are at school and now may start yoga to see if that will help keep me calm and relaxed! Renu

[gillirun1]

Hi renu. I'm not sure if can offer much concrete help but I wanted to say that your post rang very true for me. i was diagnosed 6 weeks ago having been unwell for a couple of years or more. I feel like lupus' ariival has eclipsed me. I feel as if "me" is disappearing. I too have young children aged 9 and 11 and feel sad for the way this has affected me. I also am on hydroxychloroquine, hoping it starts to do something soon. I have a feeling our feelings are a horrid combo of the lupus itself, learning to change our lives and the effects of the medication. take good care...

[Renu in reply to gillirun1]

Hi. It is so nice to have my first response and from someone who understands what I am talking about. Thank you for your comforting advise and all the best with your treatment. I think you are right their is a definate period of adjustment and acceptance before we can move on and learn to cope. To be honest, with me the polymyositis (muscle attacking itself) has been more trying than lupus because it has affected my ability to walk and stand and this is difficult to accept at a young age especially when I was very active and loved to walk/jog. However, we must keep fighting and remain positive. I am much better on treatment then I was 2 years ago when I was diagnosed. I have come a long way in 2 years in terms of progress. You too shall get there you just need to give your body a chance to adjust to treatment and for it to work. I think my lupus is now stable so I hope that encourages you. It is still early days for you but I'm sure by pacing yourself, resting and doing little and often will help in managing it. The meds were great and have really helped. I hope this is also the case for you. Best of luck. Renu

[gillirun1]

I only found this site a couple of weeks ago and it is SO reassuring that others truly understand. I too was very fit, running long distance regularly. It's very hard to recognise the me now! I am working my hardest to use energy to stay positive too. All the very best x

[janiceray]

Hi

I have had Lupus for 20++years.

I have found joining Lupus U/K my life line.and I am active in our Lupus group here in South Wales.

Please if you can Join Lupus U/k and keep on this site, learn about your illness,understand it,and work with it.but remember you are the BOSS.

Love & Sunshine

Jan x

[tintin49]

20 years jan love your post love and sunshine x

diagnosed in april this year and not coping. feel a bit lost/abandomed by gp's etc. the good thing is yesterday i saw a cousellor who listened to me and asked a lot of questions. she is trying to get me some extra support as i am not coping at all. i hope that i am going in the right direction i need my life back mentally and physically.

[Renu in reply to tintin49]

Hi tintin. It is still early days for you so things will take time to take in and accept. It is alot to take in and is overwhelming but their is light at the end of the tunnel because the meds do make a difference over time and the healthcare professionals really do look after people with lupus. I have to say that when I have any sign of infection, the medics respond immediately and do not waste any time or take chances. My Consultant and GP is wonderful and has really kept me going and positive. If Ifeel down, he reminds me how much progress I have made and how far I have come in 2 years since my diagnosis. He encourages me never to give up. This is what all our Dr's should be like. You should also be getting the help and support you deserve from the GPs etc. I am definately alot better now then I was when I was first diagnosed. I was in complete shock because I was diagnosed with lupus and muscle disease together and was not expecting any illness. I had no idea something was wrong other than mobility problems, exhaustion and a rash. In hindsight, I am pleased I know what is wrong now and that it is stable now because of the treatment. We have to be strong to tackle and learn to live with this illness. Fingers crossed all will be well for you aswell. Atleast this illness can be treated. Keep strong and smiling!! Take care. Renu

[Looby in reply to Renu]

Hi there Renu - thankyou for joining us, and for being so encouraging. I think many of us will envy the relationship you have with your Consultant and GP - this can make a massive impact on how a person copes with a serious health challenge. It is a sad truth about our NHS, that much depends on where you live as to the quality of care on offer.

The wonderful thing about this Blog site is that we don't have to pretend to be "brave" .....very often I feel so weak, not strong at all. Maybe you mean strong-willed - to not let the illness beat us into despair. A dear friend of mine (she died last August) used to say "It is like trying to push mud uphill" - and that is an apt description of the way it is on the tough days.

I would be interested to know what treatment is working for you - I still haven't got the "recipe" right as yet, and cannot help wondering if all the meds are helping or making the symptoms worse.....

[Alty]

Hello Renu,

I was diagnosed with CTD in 1999 initially Lupus and secondary SLE but each Consultant varies on their diagnosis. I can really identify with feeling overwhelmed with everything day to day which before was never a problem. I have practised Yoga since my diagnosis and this has really helped, it is important to ask about the style of Yoga and most Yoga teachers will offer a free first session as a trial. There are often Yoga teachers who specialise in working with people with health problems. If you are in the UK then there is the British Wheel of Yoga website which lists qualified teachers. For me Yoga has helped me adapt my whole approach to life not just in relaxation but also in relation to mindfulness and breathing, exercise, diet etc.. I manage my health much better now but still have bad days, but now have (most days!) an acceptance that this is the case and that it is a message to get me to slow down. I wish you well with adapting your life, sometimes there are positives in this process, I appreciate much more from life now than I ever did before my diagnosis. Alty x

[everab]

I was diagnosed 13 years ago (I was only 19), and I complete understand your feelings guys. It sucks to have lupus controlling your life. But it does get better. You learn to live with Mr L (as I call it) and accept that some days you'll have to take it slow, sometimes really slow, but you also learn to enjoy the days were you feel fine and make the most of them.

[Renu]

Hello All,

All your messages have truly helped and put a smile on my face. Thank you for taking the time to respond and my GP also reassured me yesterday that I am not alone in feeling overwelmed with lifestlye changes due to illness/disease. He said anyone with a chronic condition will respond in this way and that not only is it normal but that it will subside over time as we learn to adjust and accept and work within the parameters of this illness. I will see it as a challenge rather than a hinderance !! because I believe positive psychology will help get us through it and help us to learn to live with it. Thank u all for your encouraging words. Yoga, here I come. I try my first class tommorrow!!

Renu

[tintin49]

thank you renu for yor kind/wise words. and all the other posters on here x