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Constance, Charity and an Angel…

This isn’t my usual crafting post.

I have been on an unexpected holiday care of the National Health Service after I dislocated and broke my ankle (in two places) when I fell at home. I wasn’t participating in anything exciting such as ‘Extreme Crochet’ or ‘High Speed Knitting’- I was simply in a hurry to get to the phone.

The story started when mum was rushed into hospital causing her to miss going on holiday. I was on standby to go and look after her when discharged; bag packed and ready to go I was busy printing off some documents regarding her holiday cancellation when the phone rang. Next moment, crunch! That’s it! Thankfully Tom was at home. Ambulance called- busy, they sent an ambulance car: ah yes, we do need an ambulance (you really did not need to be medically trained to see this was the case).

Pumped full of morphine I passed out on gas and air whilst they put on a vacuum splint. First step. Next was to get downstairs… did I mention I was in a bedroom? This was achieved by me bottom bumping down whilst one of the paras held my leg. Our stairs have a return and they had not been able to get the chair up, let alone down with me on it!

A trip to A & E in the back of an ambulance. Chris was with me by now. Straight into resus where the real ‘fun’ began. They had to manipulate my ankle TWICE to get the dislocation corrected. First time there were many meaningful looks between the staff since there was no circulation getting to my toes which had turned a fetching shade of purple… serious stuff. I was put  under using ketamine- a most unpleasant experience- tunnel of death vision and all that- who on earth would do that as recreation?!

After x-ray the consultant reported to me that he was ‘despondent’ as it was not in a good position; it needed to be done again. Hell! I replied I too was despondent and that he had better get on with it but under no circumstances using ketamine thankyou very much! Drug of choice this time was propofol which I was told is soya based at which point I beamed as if they knew me…much more my style! Hey an alpro trip! Thanks Joe! Anyway, imagine being all wired up and ready for action with a team of 7 waiting to work on you… in goes the anasthetic… no effect…. more….no effect….more…. should I be feeling it by now? Yes Jill. More…more…. there she goes. A sea of faces disappeared .

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Apparently I was the talk of A & E for two reasons- my spectacular dislocation and two part break and for being the woman resistant to the drugs! I was later told they assumed this was something to do with my body’s reaction to the drugs because of my Lupus. I also learnt that propofol was Michael Jackson’s drug of choice.

Days later on my way to surgery I had an interesting discussion with the anesthetists about it just before I was put under for my op.

I am not going to give you a blow by blow of the rest of my 10 day sojourn ( sigh of relief) but like other significant events in life it has caused me to reflect on human nature and our amazing capacity for resilience. I spent time on three different wards in all where I encountered aptly named nurses called Charity and Constance and a hospital chaplain called Mr Angel (I kid you not) and many other amazing people who like me were there due to accidents that had resulted in broken limbs. A fall whilst taking out rubbish, a slip on the stairs, a trip whilst walking the dogs- nothing other than people getting on with their lives. What amazing women one and all. Instant camaraderie and deep empathy for the pain both emotional and physical.

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Bespoke shower wear on the NHS

On ward 7 we caused havoc one night when the end of Kate’s bed fell off (just before midnight) and I woke with a blood curdling scream, when the staff arrived (at break neck speed) three of us were crying with uncontrollable laughter. I was told at that point my surgery was cancelled for the day! Did I care?!

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Ingenious ice pack

Home now. Recuperating. Not quite stir crazy- yet. Ankle plated and pinned; staples coming out next week, plaster on for a further 4. No weight bearing at all in this time then gradual. Oh how I appreciate the love and care of friends and family.

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A nod to October which is Lupus Awareness month.

I was recently told I have osteopenia in my hips and osteoperosis in my spine after  a routine DEXA scan because of the Lupus. The orthos were clear this is why the break happened so easily and severely. Damn! I won’t be jogging again but I will be back on my bike this side of Christmas.

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Thanks mum

Good news though: I can still pick up my needles and my crutches!

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Annie and Clarabel

PS Mum out of hospital and doing well, being looked after by other members of the family. Sorry mum x

PPS Hats off to the NHS.


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Reaching Out

You are not alone:

 What The Regional Group can do for you

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During Lupus Awareness month in October I challenged myself to write a blog a day for the cause. I hoped that by the end of the month I had maybe, just maybe informed a few more people about Lupus and given them an insight into what living with this chronic disease is like. Some people I have known for a lifetime, and some new ‘internet’ friends responded to this in amazement  and awe and many told me that until they knew me they had only heard of Lupus through the ubiquitous American hospital drama ‘House’ where Lupus has become somewhat of a joke diagnosis. Generally they asked how it was possible to keep going every day!

house

https://onoodlesstitchcraft.wordpress.com/2013/10/page/2/

At my own diagnosis I have to say that I had heard of Lupus but simply had no idea of what it really meant. I had no idea also that a key to my reaching the point I am now – ‘medically stable’- (at least on the day I saw my consultant!) would be down to having a great GP and consultant, brilliant friends and family and the most wonderfully supportive husband. I know I am lucky. At some point on this ‘journey’ I sought the support of LUPUS UK; I am somewhat of an obsessive and felt that if I had this diagnosis I was going to find out as much as I could about Lupus and reach out to others who I hoped would understand- other people with Lupus!

http://www.lupusuk.org.uk/

Yes, it was a leap of faith at a time I was feeling very ill and totally lacking in confidence (don’t you find Lupus does that?!) but I saw a post in the Regional newsletter and decided I would attend a coffee and natter meeting. It felt like quite an adventure as I drove up the M1 to the Mc Arthur Glen outlet Village, not really knowing what to expect. What would the group look like? How would I know they were ‘the ones’. Having arrived at the Thornton’s coffee shop I set about finding the Lupus Group… I am quite sure people were looking at me strangely, wondering why I was looking so intently at groups of more than two! My lasting memory is of a white haired man asking ‘Lupus?’ to which I said ‘Yes!’. How did he know? I was not carrying a copy of the Times with a yellow rose in my button hole!   It was not written across my forehead nor did I carry a notice! Apparently I had the ‘look’! I now have insight, knowledge and some new friends.

The man in question was Brian Kimberly (who was the regional Chair and now compiles the newsletter) and I was given a very warm welcome. The group had a lively conversation comparing symptoms and medications, the road to diagnosis and life stories! All shared with a great deal of humour and no sense of anyone feeling sorry for themselves. I no longer felt alone. I came away having promised I would make a Facebook page for the regional group as I felt this would be available to some members and sufferers who were otherwise not reached. The power of social media!

https://www.facebook.com/pages/East-Midlands-Lupus-Group

I am now a committee member having been elected at the AGM last year. I remain responsible for the Facebook page. I have attended one committee meeting since then, unfortunately missed one due to my health and will be attending the next one prior to the AGM due sometime around Easter.  I have been to several coffee and natter groups! The committee is the local branch of Lupus UK and our work is very simple. We are there to spread the word, provide information and to support people. We try to get up to date information out to the hospitals with Rheumatology departments and take the information stand out when possible. Local members who fund raise can do so through the group. Some regional groups are more active than others and are able to organise larger events such as the Information Day/Conference by the East Anglia Lupus Group.

http://www.lupusuk.org.uk/latest-news/east-anglia-lupus-info-day

To finish I am appealing to you our members. The regional group can only exist through the support of its members- YOU! The commitment to being on the committee is small, the rewards are great. The more people who are involved the easier the job. Maybe you have a skill, knowledge or a small amount of time you can contribute? Contacts are at the end of the newsletter or through the Facebook page and website.

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Lupus Awareness Month: grand finale

If you have been counting you may have spotted that I have been quiet for a day or two- just busy getting on with life. By my reckoning I need to cover W, X, Y and Z- spread over the last 7 days.  So here goes.

WHAT lupus is ,is an EXTREMELY awkward,  auto immune disease that can take YEARS to diagnose and understand. I would like to ask you a favour , please pick one of my earlier posts to reblog so that we can raise awareness to ZILLIONS and not just a few! If you fancy a bit of fundraising here are a few ideas…

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Thanks for staying with me through this

Jill x


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Lupus Awareness Month: Days 22, 23 & 24

 T, U & V

TOP TIPS to USE that I find VERY helpful!

(You might too)

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If you have your meds sorted out and your bloods are stable you think you should be feeling okay but you are NOT! That’s lupus for you. So this is where the self help has to kick in- ‘coping strategies’ is another way of looking at it. For me I meet lupus head on and this post is very much about what I do to help myself.

The picture shows some of what I am talking about. When I go out I have to have a little ‘kit’ with me to cover all eventualities.

Moisturiser with SPF- this is part of my daily routine. Getting up and getting ready for the day involves applying a good moisturiser with built in Sun protection. Here in the UK I have found two. The first is by Neutogena with SPF 25 for UVA & UVB. Fragrance free and very light to wear. But becoming increasingly difficult to source other than online. I have recently discovered a replacement product by Simple which is SPF 30, also UVA & UVB and fragrance free Just as lovely to wear and a new product (I  understand) so when I found it on opening offer at 2 for 1 I stocked up!

Sun Cream- At least SPF 50 to be carried at all times regardless of the season. Sun sensitivity is not confined to the summer months or indeed to natural sunlight. Many Lupies have a problem with the light from computer screens and certain types of light bulb. We are able to get suncream on prescription but I have not made use of this as yet as I have preference for certain products! Call me fussy. I talked about the problem with light sensitivity in a previous post with links to a UK site that tells you all you might need to know-

https://onoodlesstitchcraft.wordpress.com/2013/10/21/frequently-asked-questions-rheumatoid-arthritis-steroids-and-sun-sensitivity/

Sunglasses and sun hat- for the same reasons as above. Also I often carry a scarf of an appropriate weight for the season since a particularly sensitive area is above the breast bone and can easily blister in the wink of an eye.

Sterilising hand gel- not because I am OCD but due to the fact that immuno supressant drugs make one more susceptible to pick up germs. The gel is a small step to take to guard against this.

Remedies- I carry paracetamol as a general additional pain killer. Tiger balm for headaches, ranitidine to settle the stomach (all those drugs play havoc with the digestion- as well as as the lupus- another catch 22) and my favourite Bach’s Rescue Remedy- some people are sceptical about such things but I find it reassuring in times of stress and anxiety .

 Steroid Treatment Card-  Here in the UK one is required to carry the blue card when on steroid treatment (hurrah for me I am NOT currently for the 1st time in three years) which states dose. This is extremely important since steroids must be reduced very very gradually.

The following taken from-

http://www.patient.co.uk/health/oral-steroids

Why is it necessary to reduce the dose gradually before stopping oral steroids?

Your body normally makes steroid chemicals by itself which are necessary to be healthy. When you take oral steroids for a few weeks or more, your body may reduce or stop making its own steroid chemicals. If you then stop taking oral steroids suddenly, your body does not have any steroids. This can cause various withdrawal symptoms until your body resumes making natural steroids over a few weeks. The withdrawal symptoms can be serious, even life-threatening and include: weakness, tiredness, feeling sick, vomiting, diarrhoea, abdominal pain, low blood sugar, and low blood pressure which can cause dizziness, fainting or collapse.

If the dose is reduced gradually, the body gradually resumes its natural production of steroids and the withdrawal symptoms do not occur.

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This explains it in medical terms-

Prednisone is used to treat certain rheumatic diseases and several other serious health conditions. It is a synthetic (artificial) version ofcortisol, a steroid hormone naturally present in the body. Cortisol is an essential hormone that plays a number of vital roles. It helps maintain blood pressure and regulate the metabolism. It helps the body adapt to stress. And it helps moderate the inflammatory response the immune system uses to fight infection and injury when that response is no longer needed. Cortisol is produced by the adrenal glands in tightly controlled amounts. Another gland, the hypothalamus, senses the level of cortisol in the blood and, depending on the level, signals the adrenal glands to increase or decrease cortisol production.

Therefore the body needs to gradually take back over from the artificial steroid. Click on the text to take you to the source of the information.

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Exercise- my favourites are swimming, cycling, pilates and my rowing machine. The trick is doing it when you can but NOT going all out just because you are having a good day. MODERATION is the key.

Relaxation-  do what makes you feel good! Apart from specific techniques such as guided meditation-

https://onoodlesstitchcraft.wordpress.com/2013/10/15/lupus-awareness-month-days-11-12-1314-and-15/

I talked about ‘mindfulness’ and the lovely ‘Honest Guys’ you tube channel that I personally find very effective.

If I can’t get to sleep or am wakeful then relaxing music on headphones in bed is better than lying there fretting. And my final bit of advice is to find something that occupies your mind away from the lupus- for me my crafts have been super brilliant for this and undoubtably my best THERAPY.

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STOP PRESS

If I continue to do ‘3 in 1’ posts for the rest of LUPUS AWARENESS MONTH there are only two posts left…

winking


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Frequently asked QUESTIONS, RHEUMATOID ARTHRITIS , STEROIDS and SUN SENSITIVITY

Here I am again with days 19, 20 and 21 of Lupus Awareness Month all rolled into one. And since some of this has already been covered I will try not to bore you for too long!

First of all, the good news is that I seem to have shaken off the cold I had (more or less) and am ready to spring back into action! Perhaps I should have chosen a better time to do this post (not 10 past 9 at night when I am usually getting into bed) but here goes!

Working backwards STEROIDS and SUN SENSITIVITY have been mentioned and referenced to other sites for more details so that’s that one covered.

RHEUMATOID ARTHRITIS

Like Lupus RA is an autoimmune disease and for many people involves the same treatment regime. It tends to affect the joints but sufferers  can also experience other symptoms such as the debilitating fatigue that is common in Lupus. Since many of the symptoms may be the same in presentation Lupus can be  misdiagnosed as RA. If you pop over to the following website you can see how there are a multitude of autoimmune conditions that overlap or go hand in hand!

http://www.autoimmune-diseases.co.uk/

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FAQs about Lupus

  • can you ‘catch’ lupus?
  • what are the symptoms?
  • who gets lupus?
  • what are the treatments?
  • is lupus fatal?

When I was first diagnosed these were the questions that came into my mind. And then at each consultant appointment I come up with more and more.

My biggest fear was that I was going to die… the internet can do that can’t it? You read and read and have to sift out the current information. So is it fatal? Well, it can be and it can be life limiting but that is not the case for most people. Not so many years ago, and it is my understanding that as little as 20 years ago life expectancy was greatly shortened but the drug therapy has come along in leaps and bounds so most people have a normal life expectancy. However, since the disease is so unpredictable who really knows. I have mentioned in previous posts that whilst the drugs can be very effective they all carry a multitude of side effects and it is a case of managing these alongside the detrimental affect of the disease itself. A big problem is organ damage. Click on the pic to go to LUPUS UK to see this more clearly.

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Lupus is not infectious or transmittable.

The main symptoms are-

  • Joint/muscle aches and pains
  • Permanent rash over cheeks
  • Extreme fatigue and weakness
  • Increased risk of miscarriage
  • Rashes from sunlight/UV light
  • Flu-like symptoms and/or night sweats
  • Weight gain or loss
  • Inflammation of the tissues covering internal organs with associated chest and/or abdominal pain
  • Seizures, mental illness or other cerebral problems
  • Headaches, migraine
  • Kidney problems
  • Oral/nasal ulcers
  • Hair loss
  • Depression
  • Haematological disorders including anaemia
  • Swollen glands
  • Poor blood circulation causing the tips of fingers and toes to turn white then blue on exposure to cold (Raynauds)

Thankfully most people have a few but not all of these at any one time…FYI I can currently boast 8 of these symptoms and this is at a time when my blood tests indicate that the disease is not active and I feel relatively fit and well (bar the cold I have had!)

Here comes a DID YOU KNOW…

it is believed that in the UK 50,000 people may have Lupus  and that 90% of them are female, of course this also means that 10% are male.

There are  differences in how widespread SLE is among different ethnic groups. For example, in the UK:

  • one in every 5,000 white women will develop SLE
  • one in every 1,000 women of Chinese origin will develop SLE
  • one in every 625 African Caribbean women will develop SLE

(taken from http://www.nhs.uk/Conditions/lupus/Pages/Introduction.aspx)

Treatments have been covered in another post but here is a different link if you want to refresh yourself- http://www.nhs.uk/Conditions/lupus/Pages/Introduction.aspx

And with that I will remind you that Lupus is currently INCURABLE which is why we need to spread awareness and help support the work of researchers who are trying to find a lupus specific drug. If only it was this easy!

laughter


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Days 17 and 18: OSTEOPOROSIS & PROGRESS

OSTEOPOROSIS

Osteoporosis is a condition that affects the bones, causing them to become weak and fragile and more likely to fracture. These fractures most commonly occur in the spine, wrist and hips but can affect other bones such as the arm or pelvis.

Bone density begins to decrease after the age of about 35 and for most this is never a problem but there are some factors that contribute to a risk of developing osteoporosis  such as diseases affecting hormone producing glands such as hyperthyroidism, family history of osteoporosis, problems with absorbtion, heavy drinking and smoking and long term use of certain medication…e.g. oral steroids such as prednisolone .

If you have been keeping up with me you will be aware that steroids are a mainstay drug for many lupus patients in getting the disease under control. So osteoporosis is a possible side effect of the drug therapy and particularly relevant for people (women especially) of a certain age like me! To counteract this it is advisable to take supplements of calcium and vitamin D. Oh yes, another ‘did you know?’ point, most people with lupus are deficient in Vitamin D, ironic that what is referred to as the ‘sunshine’ vitamin can be difficult for a Lupie to replace naturally since a main source of this is from sunlight….are you keeping up with me…a high percentage of people with SLE are light sensitive!

More on this here

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PROGRESS

It is advisable to keep a log or diary of your symptoms with lupus; personally I try to do this when there is a change or if I note a pattern. Generally when a review with my GP comes around or I am due a consultant appointment it really helps to focus the mind and usually means that I come away having said all I need to say and not coming away kicking myself! If you are like me it adds to the general feeling of hypochondria but actually is a very useful tool for the medics and in reminding yourself that you really are ill and not imagining it. which sadly, is how some people with lupus are made to feel, especially in the time before diagnosis.

So here is another link to LUPUS UK who have a downloadable Lupus Diary for you to chart progress or you can send off for a paper copy. I tend to use A4 paper which then slots nicely into my Lupus folder where I keep all letters and appointments. I know this all sounds a little obsessional, maybe it is but I see it as a part of my learning process. I even put in the lovely mug shots when symptoms are visible. It really does help a consultant understand what is going on with you and can therefore tweek your meds accordingly.

To finish today I will leave you with the LUPUS UK campaign poster

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Day 16… N is for no idea!!!

Morning friends, I am not at my best today and so I am cheating today’s post by sharing the following from LUPUS UK about fundraising. No it is not F for fundraising but I am breaking the rules since I am feeling rubbish! If you click on the title below it will take you to the source…

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20 Simple Ways You Could Help Spread Awareness

and/or Raise Funds for Lupus Awareness Month

Lupus Awareness Month starts next week (October 1st). Here are a few simple ways that you can help to raise awareness or funds and help make this awareness month the best one yet!

1. Share our awareness posts on Facebook throughout the month

2. Suggest that friends ‘like’ the LUPUS UK Facebook page – http://facebook.com/LUPUSUK

3. Send a tweet about lupus

4. Suggest that friends follow us on Twitter – @LUPUSUK

5. Print/order an awareness poster to put up in your work place or GP surgery – lupusuk.org.uk/latest-news/…

6. Send an email about lupus to friends

7. Ask for a ‘shout out’ for Lupus Awareness Month on the radio

8. Do a ‘Go That Extra Mile’ sponsored walk with friends/family – lupusuk.org.uk/fundraise-fo…

9. Host a ‘Lunch4Lupus’ (It could even be a coffee morning or a cheese and wine event) – lupusuk.org.uk/fundraise-fo…

10. Send a text about lupus to friends

11. Ask an employer to do a fancy dress day at work (£1 to dress up, £2 to not dress up)

12. Balloon launch (LUPUS UK balloons are available from National Office if you contact us)

13. Sign up to easyfundraising.com – http://bit.ly/lNZV6n (We receive funds when you shop online, at no cost to you!)

14. Start using EasySearch – http://bit.ly/16LNVzm (We receive fund when you use their search engine, at no cost to you!)

15. Do a cake stall

16. Hold a raffle

17. Do a sponsored sleep in (see, there is something for everyone)

18. Donate a page of clothing to raise funds for LUPUS UK – lupusuk.org.uk/fundraise-fo…

19. Let people know about our text to donate service. Simply text LUUK16 plus the amount you’d like to sponsor (£1, £2, £3, £4, £5, £10) to 70070. Eg. Text ‘LUUK16 £2’ to 70070

20.Sell some unwanted items on eBay for LUPUS UK – http://bit.ly/lYudIs

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BTW I have only got a cold but with lupus this means I am feeling pretty foul with aching joints etc on top of being generally snotty and grotty. Pre-lupus I would have carried on regardless and pooh poohed anyone who ‘gave in’ to a cold but here’s the rub… since lupus is a disease of the immune system and one of the key drugs is immunosuppressant then one needs to take extra care with common illnesses such as a cold. Hence I am treating myself with a little extra TLC and being uber sensible. This all brings me to say that okay,’ N is for no idea’ is a pretty poor excuse for a title but is perhaps best explained by my feeling poorly and is the best I can do today!

If I was feeling motivated I would wax lyrical about ‘brain fog’ but as I am not I will add a link here so you will know  I have not actually lost the plot… or did I do that yesterday!

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Yours foggily,

Jill x