hello all

[Pammy76]

Hi everyone, Well, I was diagnosed with Lupus last September, after falling ill, one day I was at a friends barbecue and the next day I got up for work and my body felt like I had been in a fight! I was dragging myself around for a few days until one morning I woke up and I litreally couldn't lift my head up. My whole body was in pain, I was like this for nearly 2 months, my family suffering with me, I just about managed to walk to the bathroom. I had numerous blood tests and eventually was diagnosed.

It was a shock, I had great health, never really been ill, the odd cold...... I have gained over a stone in weight, I am not use to the weight, I am struggling with the weight gain, my moods are quite up and down and I am finally seeking counselling to help me with the emotional strain this has put on me. My main physical issue is the swelling of my shoulders and just below my neck,. I find it hard to sleep as I am in pain constantly and my chest tightens up at night causing breathlesseness waking me up from my sleep... and I love my sleep! I am tired sometimes to the point where I just have to lie down and sleep to re-energise.

I have realised that I can't live the life like I used to, I was a confident, young woman who handled stress and the daily dramas of life quite easily and now I feel like I had to learn to be confident again and have shyed away from going out with my friends because of my weight gain and the fact that my appearence has changed so much due to the drugs.

So why am I telling you all this? My whole life has turned upside down, but the only way I can get through this is to accept that I am not the same person anymore and I have to face my problems head on. I have joined this forum to find help from fellow sufferers, I suffered in silence and am now ready to face it. So please lets talk about how we feel and make friends and share our concerns and worries and face this together.

[teecayc]

Hi

I really feel for you in your pain situation, I suffered a long while with arthritis all over while my mum basically became my carer. Not the easiest of times as she also suffers from COPD. Poor woman hobbling around with a stick looking after me! Luckily I haven't been as bad since.

Also you're confidence level.. has that improved now? I find it very difficult going out as my appearance has changed dramatically, I get very paranoid and depressed. It's like I mourn the person I used to be. I'd be interested to know if the counselling is helping you??

It's so refreshing to hear things being said about facing things together. Living like this you feel that nobody can truly understand what you're going through and how you're feeling. This site definately helps resolve that.

[Pammy76]

Hi teecayc,

Thank you for your kind words. You are right about mourning the person we used to be. I look at pictures of myself a year ago and can't believe how my life has changed, i ahve gained weight, become so self concious. I realised that I needed help so I have contacted a counsellor and am waiting for an appointment, I think that this illness is more than just a physical one, people underestimate the mental strain it causes. I have become a really moody person which isnt me at all and sometimes I feel like I have no control over how I feel and i need that control back. So I am going to see if a counsellor can help me. Ii will keep you posted on how this pans out.

Please can you tell me how you have coped and if there is anything you have done that has made this any easier for you? and of course if there is anything you want to ask me please do.

Kind regards Pam

[davinafrost in reply to Pammy76]

Hello Pam - I had years of counselling when I was first diagnosed (I also have something called relapsing polychondritis, lung disease, etc!) and it has helped me beyond expectations. After I had put on about 3 stone in weight due to the steroids, lost all my confidence, nearly lost my job, got very depressed, had dozens of hospital appointments, I finally found a course of treatment that worked for me. I do so understand how you feel about it all - it is truly a bereavement and you need to do some mourning and rediscover a new and stronger YOU! Seven years on I have finally managed to lose the weight (mainly via related health problems but every cloud...!), regain control of my life, get my confidence back, stop taking 100+ days off sick a year and got a dog! He has been my salvation as I now am forced to get up and walk him before work - around 6.35am and after my afternoon sleep - around 4.30pm - this has made all the difference to my weight and mood. He's my delight. I'd love for everyone with Lupus to get themselves a greyhound as they are naturally lazy and don't need lots of exercise. Wonderfully loving too!

Good luck with it all but, most of all, believe that you WILL get there.

Oh and, by the way, since I stopped having counselling me and my counsellor are now the best of friends (not until after I had finished though!).

[bettie]

Hi

I found it very hard excepting SLE even after 2 years.I had a full time job which i loved, I am now working only 12 hours a week,( better than nothing). I needed to keep my independence. I also have COPD and get very breathless,I have pains in my chest first thing in the morning, after i take my inhalers and steroids my chest through the day is not to bad, but by the time i go to bed my chest is hurting again. I have also put on lots of weight its very depressing.I am lucky as my husband, Kids and even my Grandchildren are very supportive (my daughter has just had a little Boy Jesse that makes 5 Grandkids).I know there are not many good days, but when there is one make the most of it, I try to even if I suffer the next day. I agree it is a form of mouring the person you used to be, but I think I have moved on from that now and take each day as it comes.To day has been a good day apart from when I got home from work my fridge freezer has broken, had to throw a black sack full of frozen food away, never mind the suns out. Keep well all

[teecayc]

Yes I'd like to know how you get on.

I'm not really sure if I can advise you on the coping side of things as I'm not too good at it myself most of the time! I just try and muddle along. Having good people around you helps.. (I feel sorry for my boyfriend sometimes as he gets the brunt of it) And like Bettie's mentioned I think it helps to just try and take everyday as it comes, although easier said than done sometimes isn't it.

And those 2 illnesses together must be awful, like me and my mum put together!

[45Jacks]

Sorry to hear your story...Diagnosis turned my life upside down too initially.

I decided to look at my life though and take the disease as a cry of help from my body and an opportunity. I have cut out as much stress as possible and make sure I take enough rest and time for myself. I completely changed my life for the better and also started looking at food, initially going gluten/wheat free which helped a lot. I have also now started on a detox/vegan raw diet which I started with a dietician several months ago and feeling so much better! Still a long way to go and still have bad days but it may be worth looking at diet and other causes such as stress.

I know it's hard but if you continue to mourn who you were instead of embracing a new you and maybe a new lifestyle that you choose for yourself than you can never move forward. I often say to myself when i wake up feeling low, do I want to be miserable and have a rotten day or do I want a good day feeling positive and looking forward. No choice really is there ?!

Alternative therapies such as reiki, reflexology and acupuncture also help if you can afford to have them. You should'nt worry about your weight either. if you are happy and confident inside you can be just as sexy and beautiful as you were before.

take care x

[Pammy76]

45jacks, thank you for the encouragement, I know what you say is right, it is a choice, misery or happiness, sometimes I find it really hard emotionally, I have turned into a blubbering wreck! I was losing control but I have realised that I have to help myself, I keep telling myself it wil be ok, its only now that I acknowledge that this isn't going to go away. So onwards and upwards! Today is a good

day.

[Ani-]

Hi Pammy,

Thank you for posting your story and experience. I just wanted to say that counselling/therapy were really helpful for me. I actually had my counselling before finally getting a diagnosis (but I had been suffering for 12 years with symptoms prior to diagnosis). I actually began my counselling because I was studying psychosynthesis (a form of counselling) and as part of the course I had to have a year of therapy. It has helped me a great deal in figuring out many areas of my life. Having a good therapist is important so make sure you feel comfortable with who you choose, you are more than entitled to go and see a number of therapists for a pre-session where you can see how you feel about them. The British Association of Counsellors and Psychotherapists have a search facility on their website here where you can see who is available in your area: itsgoodtotalk.org.uk/therap... Also different therapists work in different ways, I liked psychosynthesis therapy because it includes a transpersonal (or spiritual) element.

With regards mood and weight, nutrition can be very helpful. I am a registered nutritionist (you can find out more about me and my training here vitalitywithin.com). Currently I am working on a medical review paper on lupus and diet/lifestyle as I see that there is very little good information available for patients and I want to provide some good evidence based literature. It is hard work (and my fatigue makes it harder) but I hope to have it ready by November. On my website Blog I write about general health but much of that is relevant to lupus sufferers too. In fact I plan to change my whole website to be geared toward lupus and also depression/mood which is my specialism....again it is a big job but I will get there.

I will also be joining the Lupus UK cambridgeshire regional group. They are having a talk on 29th October so I hope to have much of my review paper written by then - if anyone else will be at that lupus information day (lupusuk.org.uk/images/pdf/i... ) I look forward to meeting them.

Take good care of your precious self

x

[davinafrost in reply to Ani-]

Hi Ani - I'll be at the talk on 29th October! I live just outside Cambridge. I might be the one asleep at the back as it falls slap bang during me usual sleep time but I thought I'd make an exception and try to stay up for it!

Maybe see you there?

[Pammy76]

Hi ani,

I will definately check out your website. It must have come as quite a shock after all those years of suffering, how on earth did you cope? I suppose on the other hand it must have been a relief to have a reason for the all the symptoms you must have had! I realised I needed help when I started to avoid looking in the mirror, I actually started to dislike myself, started to avoid going out, seeing people, the pain drives me nuts sometimes, but I hjave learnt to slow down my pace of life. Good luck with your paper and I look forward to reading it. I hope you are keeping well. Take care. Pammy x