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Diary Room
June 2010
Oh the sun has finally come to visit us in the UK this month! I love the way it makes me feel mentally and I love the way everybody seems that little bit more happier when it puts in an appearance. I do hate it for what it does to my body though! Having lupus doesn't automatically make the sun an enemy but you have more of a chance of being sensitive to it. When I was first diagnosed six years ago the sun didn't really affect me in the way it has done for the past couple of years. As a lupus patient I am entitled to get a prescription from my GP for sun block to try and combat the effects of the lovely warming rays. Somedays it seems such a chore to cover myself in the stuff so I just stay in or, stupidly, go out without protection and for too long. If I do the latter I certainly feel sorry for myself for the next two days or so. I end up having a flare which could have symptoms including tiredness, aching joints and muscles, pain all over (and in places you wouldn't imagine!) and all the usual stuff that comes with having lupus. I do try to cover up if I can't put on the cream at least but then, once again, I have to have the answers to the same old questions and comments ready for when I go out all covered up on a sunny day. 'Ooh aren't you hot in all those clothes?', 'A little bit of sun won't hurt you', 'You won't get a tan like that'....the list goes on! Hey ho, it's more of an annoyance to me than anything else I guess. The summer is coming and I'm determined not to let nasty old Mr. Lupus spoil it for me...well not too much anyway!
May 2010
It's been a really odd month for me and my old pal lupus. One minute I'm feeling tip top and just a little sore and tired and the next I'm in loads of pain and my emotions are all over the place. I've also had to pop into hospital for a third gynae op, this had nothing to do with lupus for a change, had toothache and mouth soreness and I've been so grumpy! I hate feeling grumpy, it's ok when I'm in on my own but I don't like to be like that around people. My poor dog gets to deal with my grumps and tears mostly! Another thing is that I've been feeling lazy and I'm not proud of it. Normally I'm not a lazy person, just sometimes way too tired and hurty to do much which is totally different. I have really let things get on top of me and build up...I didn't see the washing up fairy or hoover angel for ages! It was a horrible feeling but I couldn't snap out of it, I didn't like it one little bit. Hopefully things are getting better because I've started doing little household and garden jobs again. I must say it's been a struggle mentally to get myself to do anything other than get out of bed. I think I'm on my way back to my version of 'normality' now. I have to be, I need to be strong to be able to deal with lupus and punch it on the nose!
April 2010
Okay, another month gone and not much has changed really. The improvement of the weather has made me more active and made me think about decorating my flat. Well I say that but thinking about it is as far as I have got. I have all the materials and lots of enthusiasm but no 'oomph' to get going!
I must say I'm feeling pretty fed up and quite down at the moment and I'm unsure why. My body is plodding along with all the usual problems, pain and twinges but I'm struggling with my brain this month. I'm feeling more anxious about silly things and most days I would prefer to not speak to anyone. Of course I don't ignore people if I see them but sometimes I just want to exist in my own little world. I even use the self service tills at the supermarket so I don't have to make small talk with the cashier! Don't worry I'm ok, I get like this sometimes and always snap out of it. I suppose I get fed up of being the 'jolly, bubbly, fat girl' all the time and it's good to be grumpy and have road rage once in a while! This has nothing to do with having Lupus I suspect and I remember times that I felt like this when I was younger. The added pressure of having Lupus definitely doesn't help though. My GP has just changed my 'happy pills' so hopefully I'll drag myself back to my giggly, nutty, unpredictable self.
April has been a pretty boring month, but boring is good when you have Lupus! This means that no big changes have happened, no health dramas and no stressful trips to the hospital. I sometimes don't know what to do with myself when things are like that after six years of almost continuous stress and pain. I really need to learn to enjoy it!
March 2010
I can't believe how fast this year is going. I suppose it's due to the Lupus in my case, there's always something going on with my body and no time to get bored. It's been a tough month again for me with the constant pleural pain, breathlessness and a sprinkling of gynae problems thrown in for good measure! I think I've been a bit more positive these past couple of weeks though. My mum treated me to a hair cut which really lifted my spirits. I have been so down about my appearance lately. I'm 34 and have huge, puffy ankles, hair loss and too many extra wobbly bits. Some days I feel like I should be 70 years old at least!!
Oh did I tell you about my new teeth? I have had veneers fitted on my two front teeth because of enamel erosion caused by the dry mouth and lack of saliva associated with Sjogrens Syndrome. It is common for people with Lupus to also have this syndrome which also causes dry eyes, mouth, nose etc.. Anyway, I was so chuffed with my new teeth that I kept grinning at every opportunity, I'm sure there were a few calls made to the men in white coats. So you see I've done well this month, new teeth and new hair. A new body would be a welcome addition to the list as I've now got to have an op on my cervix, for the third time, for dodgy cells picked up in my smear test. If it's not 'open wide' at one end then it's at the other, hehe!
Another thing that boosted my spirits was a surprise visit from a good friend, Sean. I don't usually like having unexpected visitors due to the untidiness of my flat. It's all because of the lack of housework that I can do, I try but sometimes I let it build up until I have a 'good' day, then I have a mad dash around the flat and end up paying for it for the next week when I can't move! Anyway back to my friend's visit. He came about 25 miles on the bus to see if I was ok because I had sounded down in my emails etc.. And get this, he brought flowers too! Well the effect of such kindness was that for the next couple of days I got so much done at home, gardening, tidying, cleaning and even the washing up! The smallest kind gesture or a lovely comment does wonders for my state of mind. Some people tend to forget, no, maybe not forget but don't connect with the fact that people with Lupus live with the illness 24/7. To those who don't understand I'll let you into a little secret....It doesn't go away in the times that I don't see you and I haven't been having loads of fun without you in the meantime. Just because you don't observe all of the bad days doesn't mean they don't happen. True friends know this though and I'm lucky to have a few of those, sometimes I realise that I have more than I thought!
So, all in all, I have had a better month. Yes there's been pain but there has been plenty of smiles too...just the way I like it!
February 2010
Another month over, another month of ups, downs and in betweens! It's been a real rollercoaster of a month. Saying that though, by having lupus you get to learn that this is how your life is going to be. February has been more bad days than good but I started to feel more positive by the end of the month. I do apologise if I seem to ramble on, the thing is it all comes flooding out when I start to type. I tend keep it all to myself normally to stop making my family and friends feel uncomfortable. Writing everything down helps me so much.
I went for my echo scan on my heart and I also did the treadmill exercise test a week apart. There were no signs of blockages or anything so that's great. Apparently the reason why I am out of puff is down to 3 things. There are signs of damage to my heart, the pre-existing damage to my lungs and....this is the best bit, my weight!! When the doctor said that I felt so frustrated, does he really think that I want to be this size? When I said that I had just lost two stone already while still taking the dreaded 'munchie attack' steroids, I was met with a blank look. When I said that I couldn't do much exercise due to the breathing and pain he told me just to 'push' myself!!! I'd like to see him live with lupus. I'd love to exercise more but by exercising it means that I have to breathe more deeply which causes me pain. It also means that I'm paying for 'pushing' myself for at least the next couple of days. Ok so he's not a lupus specialist but, please, it doesn't take much to know the basics. I then asked him if this is how I was going to be now, the breathlessness and all that, again there was a blank look. I never say anything bad about the NHS because without it I wouldn't be here. It does wind me up when I feel I have been treated like an inconvenience though. When I left the hospital I was frustrated, sad, relieved and fed up all at the same time. For the next few days I felt so low and tearful. After lots of comfort eating, which I'm sure the doctor would be over the moon about, power naps and crying, I felt better and my mood lifted.
I've been looking forward to getting back into the garden for weeks and now that the weather is getting better it won't be long before I'm pottering about making a mess! I'm trying to find things to keep me sane and a bit more active. I feel like I've been hibernating this winter and it's about time I came out of my cave and scared some people with my well known silly grin! I'm also getting back onto my healthy eating plan and I'm determined to shift some of my extra wobbly bits. I must add that this is because I want to do it for myself and not because the doctor made me feel bad about my weight. I just want to be more like the person I used to be. I'm not expecting miracles but they would be most welcome!
Janurary 2010
I was diagnosed with S.L.E. on Christmas Eve 2003 after being admitted to hospital with pneumonia and pleurisy. Every breath since then has been painful or at best uncomfortable. I also have a wide range of other symptoms which I won't list here as I don't have enough space!
The main concerns at present are damage to my kidneys and heart. My heart is causing me a lot of bother this past few months. I get very short of breath from doing most things, even talking. After a visit to the consultant this week I am being sent for scans. They also reckon they'll get me on a treadmill to monitor my heart. They will be lucky to get ten seconds out of me so they had better be quick with their tests!
I've been feeling pretty rough this past month which also makes me sad. I am one of those people that just get on with things and smile and make a joke out of my illness to make everyone else feel more comfortable. I still try to do that but when I get home it's a different matter. The illness is hard enought to deal with but people's ignorance add to the stress. From the 'oh you look so well' comments on the one day out of two weeks that I'm well enough to venture out, to the looks and tuts that I get when I use my blue badge. Arrrgghhh!! Maybe next month will be better!
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Welcome to the Diary Room....
Here you will find a monthly update from one of our lovely Lupus ladies.
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