New member looking for support

[steph1977]

Morning everyone my name is steph I have had sle since 2003 was diagnosed straight after having my first son. It was awful I couldn't pick him up out of his cot the pain was excruciating I feel I missed out on the most important bonding moments. I've been on hydroxy chloroquine since 2003 also injected methotrexate for 8 years just before Christmas my consultant took me off it because I was feeling sick all the time but it had only just come on over a couple of months I'm now on azathioprine I can't feel it doing anything I'm in agony my gp gave me 6 weeks of steroids to try and ease the pain but a week on and there not helping either I'm so physically and mentally exhausted I have 2 boys 12 year old and 8 I have no energy to do anything and on top of that the pain as well my husband doesn't understand my condition I think he just thinks I'm lazy he does help me a lot in the house but I can tel he thinks I should do more but I'm also working part time most of my days off I spend a sleep cause I'm so exhausted my working. Thankfully when I was given the lower rate dla I was able to reduce a couple of hours work it helped a bit but my consultant keeps saying I should reduce more but it's ok for her to say it but we can't afford it. I'm sorry to ramble on but I am so down and don't have anyone around me who understands.

[Paul_Howard Partner LUPUS UK]

Hi steph1977,

Welcome to our community. I hope that you will find it a useful source of information and support. I'm sorry to hear that you are having difficulty finding the right medication at the moment.

We have a booklet called, 'Caring for someone with lupus' which you may want to direct your husband towards. It may help him understand lupus better. You can view it online at lupusuk.org.uk/wp-content/u... or if you would like a physical copy, please just send me a private message or email [e-mail] with your name and address.

Are your employers aware of your condition? Have they made any adjustments to help you manage better in your role?

[steph1977 in reply to Paul_Howard]

Hi Paul thank you for replying so soon. I will download the leaflet and show my husband I think it's hard to come to terms with the big change when we had such a normal life and really good social life now it's all gone not that I'm sticking up for him tho. My employers are really good they know all about my condition my supervisor has always said if I need a nap there's a quiet room I can use not that I ever have cause I find it embarrassing I appreciate them letting me reduce my hours down to the minimum I do now from full time. Do you know if other lupus sufferers have trouble socialising? I used to be really outgoing but since the lupus it's all changed I'm so physically and mentally exhausted I must look ignorant.

[Paul_Howard Partner LUPUS UK in reply to steph1977]

Hi steph1977,

I'm really pleased to hear that you have supportive employers.

I'm sure that many of the other members of this community will confirm that they have difficulty socialising due to fatigue and have had to make some adjustments. Most people with lupus have a lot of trouble with fatigue. We published an article about it on our blog in January and included a lot of people's tips for trying to manage it. If you're interested in reading it, you can do so at lupusuk.org.uk/managing-fat...

[Bronagh2015]

Hi Steph, I can really sympathise with you! I developed Lupus after the birth of my daughter and I really struggled. Paul is right about fatigue and socialising you just have to adjust your life and learn to accept a 'new normal '. My social life consists of the odd coffee with a friend or going out about 7pm for a meal and home by 10pm and I'm still exhausted the next day! Azathioprine can take quite a while to really start working, it has to build up in your system so hopefully you will feel greater benefit from it in another month or so. Are there any support groups near you? They are a great way to meet others who understand exactly what you are going through. I really hope things improve for you soon.

Bronagh2015

[steph1977 in reply to Bronagh2015]

Hi Bronagh thank you for replying I don't know if there is any support groups near me my rheumatology consultant and nurse have never said I will have to look into it. I hadn't been out socialising for nearly 2 years til last Saturday when my friend turned 50 she did champagne breakfast which as you can imagine was hard to get into as the pain in the morning is mostly the worst I stuck it for my friend but spent all afternoon in bed cause I was so exhausted. I haven't had a good time on azathioprine I had oral thrush for 3 weeks and seems as it's not helping with the pain I think I'm going to ask at my appointment next week if there is something else I can try. What are you taking? My biggest problem is I only have one kidney which doesn't function properly sometimes.

[Paul_Howard Partner LUPUS UK in reply to steph1977]

Hi steph1977,

You may be able to find your nearest support group via our Regional Support Group Finder on our website - lupusuk.org.uk/regional-gro...

[Bronagh2015]

I'm sorry to hear about your kidney Steph, Lupus really is enough by itself! I use to take Aza and it did definitely help me but unfortunately after about 3 years it began to affect my blood and when my white cells dropped dangerously low I had to come of it. Since then I have been on Mycophenolate Mofetil, it made me quite nauseous and headachy for the first month or so but seems to work well now. I'm also on hydroxochlorine and low dose prednisolone. However the fatigue is the hardest thing to deal with and my Consultant told me no medication will help that but when the joint and muscle pains subside it's easier to cope with. If you go to the Lupus UK website it will give a list of all the support groups, it would be great if there was one near you.

Bronagh2015

[DixieD123]

Hi steph

I also developed sle after the birth of my son 19 yrs ago, I also struggled to pick him up at bedtimes my daughter was 2 at the time. I'm on azathioprine & prednisolone. I find they work very well together I do have flares which we try and control. Fatigue is one of the hardest things to cope with as nobody else knows how you feel, just listen to your own body and learn to live with how you feel day to day. I hope your husband becomes more understanding in time and you get your medication balanced. Take care