well hello

this is my first blog post, although I have posted a couple of questions recently.

I'm a 44yr old woman with ILD. Before becoming ill in February I was very active, both teaching and performing belly dancing. I find myself physically unable to do much now which is very far from the real me! I also teach textile crafts and have a small business as a designer maker. I mainly work with vintage fabrics, photographs and love letters.

For a couple of months after becoming ill I was unable to do anything, but recentl;y have been able to do some of my textile work, with the help of No:1 son who had recently left school and os being employed aas my apprentice!

I have just had a phone call from a client who wants me to make some more things for a wedding, I have made wedding favours of personlised lavender and sweetie bags so ffar and will now be decorating some old horseshoes...should be fun!!

I am comtemplating taking up some gentle excercise...far from the 12 hours of dancing that was my usual regime, I also used to enjoy walking my dog, but he is too big for me to deal with (I'm still sore from the biopsies!). I try and go for a short walk every day but sometimes I can only manage 20 metres or so!

This afternoon I am printing some "thank you" cards for No:3 son's teachers, he leaves primary school on friday, Its been a very emotional few weeks, Prom, achievement awards, theatrical performances etc. My 3 boys have been absolute stars, and have coped very well in this difficult time.

Would love to hear from you, I have lots of friends all over the world, but theres always room for more!

Mrs S x

p.s. sorry for any spelling mistakes....far too reliant on my spellcheck!

14 Replies

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  • Hi Mrsshimmey

    Welcome to the BLF web community.

    I am sure you will find alot of advice, information and support here.

    Regarding the exercise i would suggest speaking to your GP or consultant for guidance on when to start this especially as you are still feeling sore and bruised from the biopsies - gentle exercise is a good thing to do providing you are feeling up to it!

    You can always give us a call on the helpline - 03000 030 555.

    Kind Regards

    Jo

  • Hello and welcome Val x

  • Hi Val, nice to meet you x

  • Hello & welcome Mrs Shimmy :)

    Congratulations to you on maintaining a positive attitude to your condition, long may you continue !

  • Hello Mrsshimmy! Welcome. I'm new too and it's a very nice place to be!

    Marie

  • no worries about chucking the art stuff out its how I make a living!! I have found myself unable to put in the hours I used to in the studio. my eldest son is helping me, he is also artistic and will be going on to study graphic design at our local art college in september...meanwhile he's putting in some hours on my sewing machine and working on my website!!

    x

  • hello and welcome mrsshimmy :)

  • Hi and welcome mrsshimmy, a lovely positive post we all have to learn to take it in our stride, my daughters just had prom from primary school leaves on friday cant believe my youngest is getting all grown up! xx

  • I know the feeling Junegirl...it's scary eh? I've loved my lot growing up...not one of those who clings to her "babies" but I must admit this one is hitting me hard!!

  • thanks to all you lovely people for adding comments and big hellos to you all!

  • Hi and welcome Mrsshimmy it's nice to meet you. I'm so pleased to hear you're doing your best to carry on with your life as normal as it can be with ILD. Do you mind me asking if your medics have put a name to your illness and what were your biopsies?

    I ask because I also have an ILD, mine is IPF and I had 2 biopsies, lung biopsy and a muscle biopsy. My lung biopsy confirmed IPF and the muscle biopsy confirmed polymyositis. I was a busy working nurse for 33yrs and carried on for another 2 yrs in a clerical capacity after i could no longer run around the wards. I really miss my job I always envisaged working till I was ready to retire and sort of hoped that wouldnt be for a long time. Now i find just having my shower wears me out :-(.

    I hope you find answers to lots of questions you may have on the site.

    Mo :-)

  • Hi Mo, as of yet they are only saying ILD, my biopsies (lung) are still doing the rounds, last heard of going down to the Royal Brompton. I know what you mean about missing my job...I may moan a lot about the paperwork involved in mine but I've resally missed my learners (I teach in adult ed).

    we are having a shower put in downstairs (we live in a converted bungalow so my bedroom is already downstairs) just so I don't have to weigh up going upstairs v doing something else!

  • Hi MrsShimmy

    Glad to see you are keeping yourself as busy as you can manage and that the family are being so supportive.

    We 'talked' before when you asked a question on the site. I have been at the Royal Brompton for a couple of days ( got back last evening). This time I was in the heart ward again being started off on a new drug to combat the pulmonary hypertension I have recently developed. to go with my ILD! ( Needed to be supervised for a couple of days to ensure I didn't suffer any bad side effects.) I am hoping if the additional breathlessness from the PH can be treated, my breathing will get back to where it was a few months ago. It is a bit of a faff, going to the RB but well worth it. They have very expert teams there that are at the cutting edge in terms of expertise in their speciliist fields and are very keen to do the best they can for you - even thought there may not be any cure yet. Not only that, because they are a specialist centre, and carry out all the necessary tests and move carefully through the treatment options, PCTs are much more likely to agree to any treatments suggested ( even though they may be a bit unusual or expensive).

    I do hope you get a diagnosis soon, so that the docs can get you started on a treatment plan.

    Maggie

  • thanks maggie, I'm near the Wythenshawe hospital ( thats not its official name!!) which is a specialist respiritory place too, I had my op there and it was amazing...I certainly wouldnt be worried about going in there again!

    I hope the new drug works for you and you get some relief breathing wise.

    Mrs S x

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