My lupus journey

My lupus journey

Hi All

This is my first blog post. I'm so happy that I found this site!! At last I don't feel alone with all my worries and aches and pains!

My journey started way before I was diagnosed 2 years ago. 8 years ago my twin boys started school and I felt a sigh of relief that I would at last have some time to do my artwork again and have some space and time for myself. Having twins was such an intense experience! From the 38 week pregnancy, a long natural delivery and then years of mayhem and no sleep, it's no wonder that I was totally exhausted all the time and basically running on adrenalin to survive. I would often feel exhausted, flu-like with a sore throat, raised glands, and brain fog. Once I was hospitalised with uncontrolled bleeding and I needed a blood transfusion. So when they boys started school at the age of 5, I thought I might start to recover, unfortunately I got worse!

At first I started to notice that I was getting really bad brain fog with muscle aches and pains, and tingling uncomfortable wrist joints -and I was exhausted. I kept expecting to get better, but every recovery was very short-lived. I was learning tai chi and chi gong at this time and loved it, it made me feel great in my spirit, but my muscles and joints really grumbled too.

The fatigue got worse and I eventually went to my GP. A year of tests showed up nothing, (except the ESR was elevated once), and I was eventually given a diagnosis of ME. It was something that people didn't 'get', especially my husband. It was really difficult as I'd be laying in bed all day, (multi-tasking my journeys from the bed to the toilet with making a sandwich or a cuppa to bring back to bed, and picking up kids from school by car) and when he came home I would drag myself out of bed, put on a cheery smile, make him dinner, and pretend that I was OK, just because he couldn't deal with me being ill. This was so hard that I really got depressed and ended up needing anti-depressants.

The thing with ME is that it didn't have a treatment as such, I just had to rest and hope for the best. Then I discovered the American human potential movement and started to believe that I could make myself better by pretending that I was (the 'lightening technique'). I believed that if I could think positively enough, I would create a positive reality. This actually worked to a certain extent, I started doing a bit more exercise, eating better (saw a nutritional therapist) learned about mindfulness meditation and developed a range of relaxation tools that helped me. However this didn't prevent me from getting more and more painful joints, mostly in my wrists at first. And this eventually prompted me to go back to my GP -I was really worried that I was developing Rhuematoid Arthritis like my mum.

I was lucky that he referred me straight to rheumatology and I got the call while I was on holiday in Scotland. It was on this holiday that I started noticing that I felt much more flu-like after being in the sun and I got a burning red face and rash too, followed by increased joint pain. This is a pattern that has continued. On my first appointment with the rheumatologist he told me it wasn't RA so I was so happy! He gave me a leaflet about Lupus and I chucked it away!! I thought "It can't be that, I've never heard of it!!". It was 2 years ago on my second appointment that he said the blood tests had shown a raised ESR and the ANA was positive for Lupus. I was thunder-struck. He gave me another leaflet about Lupus and told me to stay out of the sun. It was April and the first real sunny day of the year, I'd been in the park for an hour before the appointment and arrived with a red face and that familiar flu-like feeling...and it all fell into place.

I felt so many emotions and they were all mixed up, like not knowing which way was up! I was frightened that I would have organ failure, my faith in life was dashed to pieces (my mindset had been transformed in an instant from someone who was recovering from ME to a newly diagnosed Lupus patient), and I couldn't stop crying all the time. It made me totally reassess what I could or couldn't manage in my life. I had to give up volunteering work when i realised I couldn't cope with it anymore, and redefine my relationships. I even had to write to a friend who was very needy -and couldn't take a hint- and tell her that I couldn't be her friend anymore (difficult but worthwhile and a weight lifted off me). But the good thing about the diagnosis was that my husband completely changed his attitude and became really really supportive, and apologised for not understanding me before. Now he's really protective and helps me to not slip into old patterns of saying I'll do things that I'm not well enough to see through. He supports me in doing the things I love to do and my life has improved a lot.

The worst flare was last Spring, I was looking after my dad a lot (he's ill with Parkinsons and dementia) and it was really stressful. On top of all the usual symptoms, all my joints got really bad and my hip got so bad (the pain was so excruciating) that I needed crutches to walk. That was the last time I had bad arthritis, now I tend to get more in the way of arthralgia.

It's a real pain in the butt to not be able to go out in the sunshine, and to be constantly worrying about exposure to UV (the other day, I spent an hour in the garden, it was dull and drizzly so I didn't think to reapply my sun block, and when I came in my face was burning red!). At the moment my tendons and muscles in my arms feel like they are on fire (like fire ants in my arms!) and the brain fog can be so bad that I often can't finish a sentence (I forget the words)!

Now, even though I'm poorly most of the time (it's getting worse, I seem to be constantly flaring this year) I feel that I have a really good life. I do the things I love, like my artwork and gardening. I've started taking Tumeric to see if this helps and I'm looking into whether I need to take VIT D. The Tumeric seems to lift my mood and helps me feel more resilient to feeling rubbish -very welcome indeed!

Well I've rambled on, so if you are still reading -thank you for hearing me out! I'm so glad to have a space here to write my thoughts and share time with you all, what a great community :-)

13 Replies

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  • Brilliant to hear that you are so positive. My story is slightly similar. I had twin boys and then a daughter two years later - as soon as I had her my symptoms showed - joint pain/fatigue/fuzzyness but I put it down to the stresses of having three young kids. Took ages to be diagnosed but when I was I was relieved in a way because people didn't understand at all. Treatment alleviated things but I still have regular flare ups which seem also to relate to hormones. I take Vit D combined with Calcium which I think are meant to compliment each other (Calcihew D3). They are also quite nice chewy things which makes a change from the mound of pills that are a chore to take. Don't know about tumeric (apart from in cooking) what are the benefits? Take care.

  • Keep going Girl.

    A lovely read and so like us.Would like to here about the Tumeric if you do not mind sharing that with us

    Love & Sunshine

    Jan

  • You sound so positive, and thank you for sharing your story, I would also like to know the benefits of the Tumeric, if you can share this with us, keep up all your good work :) x

  • Hi lovely people, thanks for your comments.

    I've heard from several nutritional therapists that Tumeric is a very effective anti-inflammatory, and it is also helpful in supporting the liver. I've only been taking it for the past few weeks, and I take it in capsule form (2 caps in the morning and 2 in the evening). If I'm cooking something in the evening that I can slip the tumeric powder into without it becoming too strange then I do this instead of taking the caps (it's much cheaper). So far I've put it in shephards pie, any rice dishes, chilli, and curry of course.. anything with a sauce really.

    Before I started taking it, I was very low and considering asking the GP for anti-depressants again. After 3 days for taking Tumeric, I noticed my mood lifted, and I am sure it wasn't imagining this! It was like the magic that anti-depressants can do. The herbalist who recommended that I take it, told me it supported the liver and so it also has a positive effect on your mood, which I can testify is the case with me :-)

    I think if I'd written my first blog before I'd started the Tumeric, it definitely wouldn't have had such a positive tone to it! I'm finding that it's helping me stay positive and cope with the pain better. I think it's worth a go.

    I haven't told my rheumatologist yet, so I really hope he's ok with it!

    Thanks for the tip about calcihew D3, I agree, chewable is better then swallowing all these pills and caps! I also have a D3 spray 3000 which I want to use as soon as I've been tested. A friend of mine who is currently being diagnosed with MS is taking a D3 10,000! She knows health professionals that recommend that people in these latitudes take that much as a matter of course for even healthy people!

  • Hi

    I'm so sorry for your trouble. For many years I lived the life you describe in your post. Then a doctor prescribed a low dose of prednisone and everything changed. Now I wake up cheerful most mornings, my head is clear on most days and I am able to engage in low-level physical activity (I'm pretty old, so that's just about normal).

    I don't live on prednisone; I just take it to quiet the flares. There are dangers associated with steroid use, but so too are there dangers associated with untreated lupus. I have looked up some sources that discuss low-dose prednisone use for the treatment of lupus. If you are interested in learning more about this topic, check these sites out.

    And good luck. One of the hardest things about being sick is the sense that you are letting other people down because you're not living up to their expectations. I'm glad your husband is on board now.

    rheumatology.oxfordjournals...

    jrheum.org/content/36/3/560...

    lupus.org/webmodules/webart...

  • Hi, thanks for your comments. I hadn't thought about taking a low dose steroid but if that helps then I am very interested. I'm seeing my rheumy in a couple of weeks so I'll ask him what can be done about my constant flares.

    It's really hard not being able to say 'yes' to people cos I don't know what I'll be feeling like on that day, so I don't tend to commit to anything even if it sounds really fun. It's so difficult to plan anything and I'm worried about going on holiday (Cornwall and Wales in a campervan).

    Thanks for the links, I'll have a look.

  • Hi Dryad,

    Many is the day I silently thank the rheumatologist who gave me back so many productive hours of life. Yesterday, for example, I woke up with one of those headaches many of us can relate to who have lupus. The pain drove me from my bed and sent me straightaway to the medicine cabinet. In the past I would have suffered for at least three days in absolute misery with the headache and for weeks with associated symptoms. However, I drank a cup of coffee (actually good for most headaches), stuffed some bread in my mouth to cushion the stomach and took 3 mgs. of prednisone. Last night I slept, sitting up, it's true, but I slept most of the night and today I am at the computer typing. Although there is not a complete remission of symptoms, I am able to cope with this level of discomfort. Of course I will taper off even this low dose as soon as possible. Please read the links. Although it can be upsetting to read about the things that can go wrong, I think that we have to inform ourselves if we are to cooperate in our care. My guiding principle is this: the ultimate responsibility for my care and the consequences of a treatment plan will always rest with me. I hope you find a way to a peaceful and productive life. And I hope lupus takes a vacation when you are on vacation!

  • Hi there Dryad - welcome to the Lupies! Is that some of your artwork, by the way? (Love it....) I'm an amateur artist/photographer too, and it is one of my sanity preservers!

    Read your story with great interest - we have twin boys in our family - my neice had a tough time when they were babes...she lives in Australia and family over there are very supportive, so that's good.)

    Like you...it took my husband a while to "accept" the symptoms - amazing that as soon as something has a "label" (and can be read about and researched) then it somehow becomes a legitimate condition! He now helps as much as he is able to (he has health issues too...so we encourage each other).

    This Blog site is SO helpful (more so than Doctors, sometimes...) and I've learned a lot by reading info on the American Lupus site too. We are all different in the severity/frequency of our symptoms but there are some common threads.

    For me, the worst time is when I first wake up - after being more or less in one position for more than 5 hours - it may be one of the factors that contribute to insomnia. (i.e. fear of the zombie state for an hour or so of consciousness!) There's a theory that this is due to low blood pressure, which affects circulation and manifests as the "brain fog", stiffness and lethargy we all seem to have on occasions. Another symptom, which may or may not be a circulatory thing and which also happens regularly, is the night/or daytime "burn-ups" - you describe this as "fire ants in the limbs" - really uncomfortable and scary..... We have a GP who dismisses these things with a smile, making me feel like a hypochondriac - or she says, "What do you expect at your age?" (I'm ONLY in my early 60's!!!!) I try to keep my visits to her to a minimum, because she only seems to be able to deal with one thing at a time, and Lupus affects ALL body functions......Thankfully, the Rheum Consultant is more "clued up" - but even she can only suggest medication to help prevent joint swelling and pain. (Twice, I've been to her to have fluid taken from knees).

    Hope the weather warms up soon, so we can get out into our gardens/parks - plastered up to the armpits with Factor 30!......

  • Yes (thanks) -the mandala is something I made in my local woods last November. I usualy work in textiles but I do love to get out into nature and spend time there when I can.

    It's funny how having a label for the symptoms (and is measurable in the blood too) helps husbands 'get' it! it also helped me to 'get' it too -that it was definitely real and I wasnt' imagining it! So many years of feeling like a hypocondriac!

    Yes like you I find the first part of the day hard -getting out of bed is difficult and I have to often force myself so I can get the kids get up for school. Today I didn't have to so I'm still in bed!! Interesting that this is due to low blood pressure. I'll look into that.

    Thanks for your helpful comments :-)

  • Hi - have you looked at the Video (from Lupus UK) yet? I've ordered two - to show family and friends.

    I said to my husband yesterday (when I was "stuck" in bed, barely able to move) - "How on earth do people with children manage when they are like this?" I guess you wish you could "plug in" to some of their energy? It is good for youngsters to know that adults have their limitations too - it maybe helps them to be more understanding and helpful.....

    I had two miscarriages in my 20's (no other children after that, as had to be sterilised at 35 in an attempt to stop severe bleeding with endometriosis). I didn't realise then, that this also is part of the Lupus syndrome.... GPs just treated it as a Gynae malfunction.

    I've been very fortunate, in that I married for a second time and my husband is so much more compassionate (and fun..). He also has two grandchildren - so this is a bonus - as I'd come to accept this was a part of life I wouldn't know.

    He is also able to take me abroad about twice a year - and the Mediterranean climate (and better food) is good for easing the pain in joints, etc. Cost of holiday insurance is another issue which affects us Lupies - we have managed to find a company which covers everything (as my hubby has diabetes and angina) and doesn't break the bank! It is worth asking for "Special Assistance" when booking seats too - the airlines are SO helpful these days. We have had other passengers giving us resentful looks however - not everyone understands!

    Stay positive...and patient during the "zombie" times.....

  • Hi Looby my head is a bit clearer today so I feel like I can write again! I'm sorry to hear you had 2 miscarriages, that's a really hard thing to go through, I have a friend who has also had 2 and it's really heartbreaking. Yes it was very hard when the kids were small, I actually had a bit of a breakdown when I realised that I just couldn't go on anymore, I was so exhausted and didn't have anything left to give. Even though my boys are very caring and considerate, if I'm honest I'm really enjoying the peace and quiet (they are away on a school trip this week !!) and I still feel fortunate that the days of hands on parenting are over and that they can do most things for themselves now. I feel like I barely survived!

    Where do you go on holiday? How much do you usually pay in insurance? Do you have trouble with the strong sunshine? I am really photosensitive and I thought that my holidays abroad were over!

    Thanks for the encouragement x

  • Hi Dryad - I've been in a "flare" over the past week, so sorry I haven't replied until now. It was so bad, that I wondered if some aspects of it (like nausea and severe headache) were as much to do with the combination of meds as to the SLE.... so made an appointment with Rheum.Consultant (last seen about 6 months ago). I didn't have a long wait to see her, but then the actual consultation was very rushed - it was clear she hadn't read my notes, and wasn't much interested in the diary she suggested I complete. I took on board that she was stressed herself and behind on time, so will just have to wait for blood results and hope she has more time on the next appointment! It is frustrating when I had the impression that she was only interested in one aspect (in this case the joints) and referred to other health professionals for the remainder of the symptoms.

    Onto a more positive topic : holidays! We look for last minute bargain holidays online - our fave places being Portugal, Turkey and Crete. We tend to go when the weather is not too hot (18-24C) and choose accommodation right next to the sea. Factor 30 is usually enough to protect exposed skin and I always wear a wide-brimmed hat when out in the sun,with a lightweight cotton shirt or shawl to cover arms and back. It is so lovely to be able to walk out in the evenings, when the sun has gone down - but it's still relatively warm. There's something about natural Vit D that comes from sunshine - that really eases the symptoms for me......it takes about 2-3 days to notice the benefit though.

    Insurance varies from Company to company, so it is worth spending a few hours to shop around. My husband also has medical conditions which bump the price up, but we now have a years' cover for both of us - costing about £240.00..

    Hope this answers your queries - and that you are having a better week!

  • Yes we watched the DVD from Lupus UK recently (and I wished I'd had it sooner) It was a real eye-opener for my husband and we took a while to digest it. It helps people understand what we have to put up with.. without coming across as too alarming. I want my mum and brother to see it too as they have struggled to understand me at times, especially when I have to let them down on planned events.

    There's so much I want to say to you all, but I'm feeling really awful today, I am having a pre-mens hormone flare... I think...it's a bit confusing.. the flares just seem to never end and merge together. I feel so exhausted, in pain.... and angry! I know it will pass but that doesn't make it much easier today. I'm just fed up. I hope the rheumatologist can help... and thanks for the links. I'll ask him about prednione.

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