Lupus - WHO?
What, How, Why? These are some of the responses I had when I was diagnosed with Lupus at the age of 34, and are many of the questions I have if I tell anyone about 'my Lupus!'
It took quite a while for my diagnosis to be confirmed, but in 2008, when it was, OMG - What a Shock!! My husband was fantastic, and still is.
Telling my parents was worse - I dreaded it and I think it was worse because my Aunties friend has Lupus which was not controlled at first, it had therefore already started to affect her organs by the time diagnosis was confirmed - not a great start to our conversation. They were and are brilliant and supportive, it's just me, I hate asking for help and have always been so independent and capable that it hasn't come easy to me to firstly admit I have Lupus or what that means to me, and secondly admit that I can't do everything and sometimes I need to ask for help. (I'm still working on it though!). I am very lucky and blessed as all of my family and close friends, have been and continue to be wonderful.
I never ever thought that a person could ever feel as tired and lethargic as what Lupus makes you feel - it is debilitating in that sometimes you cannot physically get up out of bed/off the sofa to make a cup of tea or do that chore you need to do, just getting up to go to the loo is a damn struggle. Mid-conversation it is quite commonplace for me to fall asleep, before we knew what was wrong my other half was becoming very concerned that he was boring me with his topics of conversation - we can laugh about it now!!
There are many side effects that Lupus can cause, some I have suffered with & some I haven't.
I take a mixture of tablets everyday, hydroxochloroquine is for the Lupus itself to help keep the symptoms at bay and the others are to help control the side effects. The one's My Lupus has kindly shared with me are; tiredness, anaemia, hair loss, swollen joints which seem to get worse in cold spells of weather, headaches which are phenomenal and are likened to Migraine, mouth ulcers and depression.
The tiredness, which I am reluctant to call it, is a problem for me. I felt tired during pregnancy or the morning after one of my four little ones had been up in the night, but what I feel now is not tiredness - this is exhaustion. The problem being that if you feel tired and need to catch up on your sleep, you can usually do this by having an early night or two. The tiredness with Lupus is there every day; some days are worse than others but even if you do have an afternoon nap or an early night, the next day can be just as bad as the nap just offers very short-term relief. What you have to do as an individual is accept that your body knows when you need to rest and you have to LISTEN!
The anaemia clearly doesn't help this, but the iron tablets do help to keep this side affect under control, plus lots of red meat and green veg. Oh and chocolate, lots of it - see, there's always a bright side...!!
Telling people is not easy, although I haven't really told many people outside my close circle of friends, family and work colleagues. People don't know what to say and usually have no idea what it is anyway.
It is not a visual condition and the 'you don't look ill' is a usual response. 'GOOD' I don't want to look ill!
Lupus.org.uk is a great source of information for sufferers and their families and the online nurse offers great support. There are many fundraising events organised through the site and my family and I have got involved in raising money for the trust through events.
There is no cure for Lupus as yet, although many drugs can be taken to help keep it under control. Regular blood tests keep a check on your ANA (Antinuclear Antibody) levels and medication can be altered accordingly.
When you are unwell with an infection for example, the Lupus actually joins forces with the infection and fights your body as opposed to helping your body fight the infection - its very kind like that. That is why I have the flu jab every year; I don't fancy my cold turning into pneumonia!
It is something that changes your life and that of your family, but you can deal with it and you can get through it!
That is 'WHO' Lupus is.