To find and give support

I've had my Eczema support group for the last 5 years! yes the group had to change beginning of last year due to it getting to big and too out of hand and far to many arguments on topical steroid addiction that i changed the setting to be solely UK instead of world wide and that all discussions on TSA would be pointed towards the right groups but not really allowed in my group. I do enjoy having the group though, i like being able to give advice and support to people who are in the same shoes as my eldest! It is a lovely little group fingers crossed we haven't had any arguments in this new one at all! and barely any issues and it is such a huge relief when not having to delete people or have stern words as I am not great with confrontation!  https://www.facebook.com/groups/1409148029366627/ is the link to the group for anyone reading that may be interesting but you must be in the UK. 

I did set up a in person group but unfortunatly due to moving had to stop this and we only had two constant members myself and my friend! it was just a shame that we were starting to get the word out there more before we had to move but alas it just wasn't meant to be! However now that  we are down in Bournemouth I am hoping to set up a group down here as there isn't a group in either Bournemouth or Poole!  so an opening at least! I do intend to get things under way and see what can be done as i do really want to set a group going again and feel like I am doing something useful. 

On this note i would like to have a look into groups for Hypermobility. I do believe there is one in Poole every so often but  would have to try and work it round school and to take a look into it more. Or even see if i could set up a support group for that too! though don't want to overwhelm myself or the kids as after all i'll be dragging the youngest to all these! 

In doing these things I am hoping to make new friends but to also get some support, advice and to give it out as well as finding people who understand what we go through which can be hard as not everyone can understand why the 7 year old can run around one minute and then the next be in complete agony and not able to walk. ( it is something to be seen really) We can't do normal trips out without some sort of pain and keeping her topped up with her meds which is great... when they work. ( also who wants to keep having to give their child pain killers just to get through the day!) 

I suppose in a way i should be greatful for the likes of Facebook because i have been able to make my own group and also help admin a group on Developmental coordination disorder (Dyslexia, Dyspraxia etc etc) i have found a group on Hypermobility as well as one for parents of children with nut allergies ! If it wasn't for some of these groups i would have lost my marbles ages ago! As well as gaining wonderful online friends and knowledge we get support from each other which is so so vital. Now if i can do this in person and find someone to go for a coffee with to have a little whinge with each other about our problems i won't have to vent so much on here!! 

Got Physio appointment tomorrow for eldest should be very interesting considering the terrible few weeks we have had with instances of not being able to walk at all!  and painkillers not working. I'm not holding out for a miracle but i do think we need some aids to help when she is having considerably bad days. Fingers crossed! It's going to be a hell of a long day. 

The end of 2014 and the start of 2015

Well it is the 1st of January 2015.. I know everyone will be doing what I'm doing, going over the last year and looking forward to this one! however there is only so much you can post on Facebook with what you would like to say!

I think that 2014 was a year of learning and growing ( even if hubby says how much more can we grow up we are adults!) But personally i think we have had to grow up and learn how to cope with alot of things and to take huge steps.

In March our eldest was diagnosed with a nut allergy, really rather scary! especially when you start seeing how much it is in everything yes even just may contains but not all companies are covering their back there, they have to have a proven risk to put on a may contain. I know people think I am paranoid and over protective but if it was your child would you let them play Russian Roulette with something that could potentially kill them? no you wouldn't so don't judge me when I am trying to protect my daughter from having a possible serious reaction. Epi pens after all should be used in an emergency not an excuse to eat your allergen.  Being on this particularly journey has opened up my eyes in  what we have in our foods and wondering why, and asking companies why there are these things and why is there a risk? and having big arguments along with other nutty mums with the giants like Tesco! (not good if you get annoyed easily!!)

In July we finally found out what was causing our eldest the pain in her joints, and that she has joint hypermobility syndrome. Now most people might know of hypermobility with people who are/ where termed as being double jointed! Now alot of people being hypermobile doesn't cause any issues and some actually find it useful, alot of footballers and dancers are actually hypermobile and it makes them more supple! Then you get people like our eldest, who gets the pain with it, only 10-15% of those with hypermobility actually suffer with the syndrome. (My source being Arthritis UK) Knowing what is wrong is just one part of the journey. Yes great we know she has JHMS ( joint hypermobility syndrome) but trying to get the help after that seems like hitting your head against a brick wall!  We are trying to keep her active, but a general walk around the supermarket is enough to cause widespread pain and wipe her out.  Don't  get me wrong some days shes ok, she can run around with her brother, walk to school and be ok. Then you have instances where she literally can't get out of the house. ( This is not for the lack of love for school as she was upset she was going to be off school for the winter break!)  It is very very draining and not alot of people understand or i think can deal with my moaning about it. I have cried over it, more then i should perhaps and i know there are people worse off then us. But this is a huge thing for us to deal with. Especially having no one close by to lean on. We have physio and a couple exercises and need her to get her back to swimming but we needed to get settled in to the new area and house first!

Which leads us to the big thing! our move to Bournemouth!! We moved in September and have been here now for just over 3 months. Silly, crazy hectic! it is hard being away from our family and friends, family the most and on our trips back that does hit home rather hard esp when we are trying to split our time when seeing everyone.  I hope the kids understand our decision when they are older, that we wanted something better for them, better environment. Eldest adores her school and they are so understanding of her issues ( all of them!) when the teacher wants to take you to hospital and rings up to see how everything is as she knows we have no one down here.. that is a sign of a good school ( or perhaps just a good teacher! ) We are however finding the car trips up and down easier and not so much of a slog we are getting use to the long trip so it doesn't feel so draining.. unless children are being sick!

I am not sure what 2015 is going to bring for us now that we are here, I am hoping that we will get some help with our eldest,  someone to give us good points to do instead of a blaise well do this this and this and she will be fine. No.. shes not.  Our youngest will go to nurser this year  after Easter as his birthday is in February he starts the term after then... Fingers crossed he will be willing to go! but i will cross that bridge when we get there! we will also see if he starts to talk more! Not that he doesn't make himself known but  we rarely get much more then a few words out of him!  Nothing else is planned, no holidays thought of  as most of our holiday time will be spent coming back to see family, however we do want to go to Cornwall whilst we are down here!

No big birthdays this year as that is next year! So we will just have to see what the future brings for us! It will never be a smooth ride but I am hoping that there arn't as many bumps in the road. Looking ahead!  Here is hoping it is smooth for everyone i know and love xx

Disabilities and London

Yesterday we got to see first hand what it was like for someone to have a disability and to try and get around London. Due to eldests joint hypermobility syndrome and the increasing difficulty she is having walking we would hire a wheel chair from shopmobility. This is because we were going to London showing our Australian friend around!  ( Though pretty sure we spent more time on the tube/ traveling then doing stuff in London! )

Hiring from shopmobility was easy! i don't think £15  (£40 refundable deposit) for the weekend was a bad price at all, it is a narrow framed one so not to big for her to sit in and seemed alright and a bit lighter then i thought it would be! We had fun getting it into the car esp with the push chair too but we all seemed to fit!

We knew that going on the tube was going to be interesting with the wheelchair, after all its not easy with a push chair but seeing as we visit London atleast once a year we were use to a plan!  Wheel chair was a bit harder, thankfully eldest can still walk and so we had to get her out to walk up and down the steps/ escalators whilst, daddy had the pram with the youngest and I carried the foldable wheelchair. Note do not do this whilst the tubes are busy as every man and his dog is quite happy to sweep the 7 year old along in their waves whilst you are trying to get everything folded at the last stage so as to minimalise the walk /steps. Stressed out isn't the word and I do apologise to my friend and husband if i ended up ratty!  There just isn't enough accessability to use the tubes and only a handful of stations that are disability friendly! Also when there are lifts ( not covent garden as that is lift only unless you are mad going up those stairs!) It annoys me on a normal basis when people use lifts who don't need to but here we had people who could walk and there were escalators like 2 feet away to use and yet they took up space in the lifts!  seriously? i would rather the escalator any day!

Ok so tube was a new experience and most people did move to make room for it. I won't go on about those that didn't! The buses weren't to bad and though we let one bus past the one we did get on did make room for the pushchair and wheel chair! ( good job as mr fell asleep!)

What fustraited me most about our time in London was people cutting in between me and hubby and then streaming between us it got so much at one point in a shop i actually said that people were being very rude. It was like because she was in a wheel chair we could wait and they could just barge past us.  It makes me wonder how people do it generally, we really struggled with peoples rudeness and not paying attention, i'm not sure how i didn't run over more feet or that people didn't fall into the wheelchair!  It felt like we were being blanked it could just be the general rudeness of people and possibly might have happened with her walking but it felt like every person was just  determined to move infront barge in  or get between the people i was with. No i'm in a group for a reason. Suppose expecting London to be hectic i should have expected the rudeness, i actually thought more people would be accommodating due to her being in a wheelchair. I was very wrong!

It hasn't stopped me from going to London and we might possibly be going back to do the things we missed. This trip has made me think of those who have to use a wheel chair permanently, and how difficult it must be for them to get around, esp with the new rules on pushchairs/ wheelchairs on buses and then having it so difficult on the underground. It's not right.  I think i have learned a new perspective and i will be more respectful to those in wheelchairs and not grumble if i have to move even with sleeping children!  I do hope as our daughter grows this trouble we are having walking gets a little easier so we just have to manage pain relief rather then  wheelchair options. But i know now we could cope, even if i do want to run over peoples feet!

Free From Ranges

Now, I appreciate that Free From ranges have to have some other scopes then just nut free, dairy free, gluten free, wheat free, egg free etc. There seems to be a great abundance of gluten free things (some things you can get on prescription if you are a celiac! )and not alot for everyone else.

We got some vouchers via Orchard from Tesco for their free from range and thought it would be a great chance to get the eldest in some bits that would be good for her. She is adament she wants some mince pies... try finding a mince pie without any nuts in or nut traces! it is impossible! we are going to have to  make our own. Oh woes es you, you are all most likely thinking, and as much as i enjoy cooking and baking its just the inconvenience of not being able to just pick up a box or have one whilst we are out and about as a treat. It's a pain in the bum!

We recently lost a chain of cakes, Fabulous Bakin boys, as they are going to start introducing nuts in their cakes, where as previously they have been very specific and special with their nut free environment.  Now no longer. Now think on, unlike some our eldest is not use to not being able to have cakes, up till March she was able to have anything within reason and now try telling the 7 yr old that she isn't allowed something. Que.. some emotional issues as it is so hard for her to understand and get her head around why so many things have may contains or nuts in!

Every single cake in the Free From range in Tesco either had nuts in or may contains, how is this helpful for people like her? it isn't! it's not fair. Even cereal can be hard to come by and as I have stated previously I will not chance it with cereal, biscuits, cakes and things as there is a higher chance of cross contamination.  Makes me sound like the over  active parent and I suppose I am, but I would rather not have the alternative.

In the end with the Free from vouchers we got some oven bakes that are gluten free for hubby to try with his digestive issues. If only everyone didn't focus so much on Gluten free!

If anyone finds any nut free mince pies/ christmas cakes etc ( that means no may contains too!) i'd love to know! in the mean time i shall be baking !

Northerners on the South coast!

Well tomorrow marks 6 weeks since we moved to Bournemouth! .. a 250 mile journey from the old house to the new house.. according to googlemaps anyway! To say it was a hard journey is a understatement. We moved away from family and friends and the area we had all grown up in ( give or take a couple of miles!) I am not sure how people do the whole moving to Oz thing! because sometimes the distance between us and home now seems huge! When it isn't too bad. But as my mum says any move is too far. Having the ability to just pop around for a chat, brew,  advice is what makes it hard. Friends well we didn't meet up very often and i speak more to my friends via Facebook then I did in person. Busy lives and all that. I could write a huge list of what I miss  but I best not or I will start crying!

We couldn't not come however, the chances and possibilities here where big compared to at home, hubby got a new job, more money and better position, a job he had tried to get back at home and couldn't. He would have had to move jobs at some point to progress and it was a chance find to see this job advertised. It was me who told him to go for it. I said, if he didn't he would always be asking.. what if. We had always talked about moving but who would have thought it would happen!

The big thing was our daughter, her treatment and her health. It was harder then I imagined leaving her dermatologist. A woman who had done so much for us it was un true!  and yes now i'm crying.. ( and yes i was before.. ) Here we are struggling to get the referrals she had back at home, dermatologist is on the cards but no sign of physio yet and the gp said no to a rhumatologist and a allergist for my atopic child.. ? yeah some of these things do no compute!! But i will fight if i have to. And always will for her rights. if this physio app doesn't atleast pop though the door soon I am going to try and chase it up. We can't wait around when a child is in pain. But we moved down here for it to be warmer and cleaner environment, clean seas to chuck her in for her eczema!!

We did get a school sorted for her though which was a big thing of course, she seems to like it and loves being able to learn french, i like the fact they sit and read with the child most days and the fact that they were shocked at her reading ability and have lovely comments most days coming home about her comprehension and expression.  ( one less stress!!)

Can't say we have had much lovely weather, sometimes it seems we pulled down most of the Manchester weather with us!! its rain so much and so many thunder storms in the last few weeks. We hardly had any back home and the big one we did have we stood up and watched ( it was like 2 am lol)  Had a few small ones here but more then we ever had at home in Leigh.  Daughter keeps talking about Snow for christmas and i keep telling her that it never snowed at all last year and i doubt being so close to the sea that we will get any but we will have to see what Winter brings.

The street is nice enough, friendly enough neighbours, just a few issues with parking as there is limited space as its a cul de sack. so a bit of tetris some days! ( more so on the weekend!)  we are close to parks, and wooded areas, and a frequent bus service to Bournemouth and the local high street. Can't complain ( though i do miss being able to walk to the main shops i liked, like home bargains! suppose it saves me some money lol)

Not everything has been great, like losing our rabbit Lucy to a fox. Which was not a circumstance we even thought of happening. It will be some time before we consider anything for outside or actually inside, since we can't have dogs or cats due to allergies and the private rented property. A fish might be in order!!  But I am not sure we will get over what happened atleast us the parents. it has hit us harder then we thought as she was the first family pet and it is such a traumatic way to die and find. Thankfully i am just glad that madam hadn't gone out to feed her and i went out. One small saving grace!

In two weeks we travel back up North to visit family, celebrate hubbies birthday and to see the Manchester Christmas markets! It will be a whirlwind trip travelling up after school on the Friday and back on the Sunday evening! we won't get as long as we like but least we will get to see people.

Right so that has brought people up to speed with the last few weeks. Being a Northerner down here isn't so bad, no one has mentioned it apart from a lady in Pizza hut on daughters birthday who thought we were on holiday! We still find tastes of home like Uncle Joes and staffy oat cakes.. nothing will take the Northener out of me. Wigan girl at heart, feeling just a little home sick for family xxx

The Times they are a changing...

There is a lot about to happen in our house, moving 250 miles being one of them!  It's a bit of a shock and it's taken some serious talk between myself and hubby! It all started when  he saw a job advertisement in a magazine and pondered about taking it, the catch? well that it is in Poole, Dorset.. a place where we normally go on holiday!! He ummed and ahhed over it for a while and I asked if he went for it, he said no, so we had a talk and he decided to give it a go.

So before our holiday he was asked to come for a interview, (que fast booking of a hotel room and time off work) That went fine and we then went on our holiday not knowing if it was a ok or not. After coming back we find out that he had passed the interview and they wanted him to do another task ( we were worried he would be asked to come back down again!)  After doing another task via email he got a phone call a week or so later giving him the job. Que omg moment!   I am so proud of my husband, he has tried to progress in his job in his current employment with no avail and basically been told he would have to look at other avenues if he wanted to move on..  and so he did!
His new job wouldn't want just anyone to have to move so far surely? he must have really impressed them, or else they would have gone for someone closer to home!

The hard part was telling family, having no family or friends down in Dorset it seems like a crazy decision  but could we really refuse a better job? a better place to live and better environment for  our eldest and her health? It is a scary prospect,  I won't have that  ability to pop round to my sisters, or have our parents drop in, or have the play group my youngest is use to.   We won't have the dermatologist that has helped us for 6 years. Or the doctors that have finally started to help us.

But that is something we have to face, we have said we will try and come up at least once a month and people can come down to visit if they can/ when they can and there is the internet with Facebook and skype etc that we will try and use!

We went down to Dorset a few weeks ago and were able to express our interest in a rental property ( also ouch on their rental prices) and have got the go ahead after references etc have gone through! So it's all go here!  We have just over two weeks before we move and so much to fit in, its silly. But i have the job of packing... oh fun! and trying to find eldest a school and then prob sorting out bills...that is never fun :(  I have to see if the hospitals and specialists will transfer hospitals for us.  or else we will have to wait for the referal process again -_-


There is no denying that it is going to be hard all round and my latest worry/ fear is that it won't fit onto the van! it's not like we can do several trips!!

Okay the time for panicking is not now!

This is a great new start for us all.

When a holiday isn't quite all you expect

Well we returned from our holiday to Norfolk on Monday and we are glad that we did, to say the least it wasn't a great holiday, don't get me wrong we had some nice parts but there were so many little parts  that made the whole experience just so exhausting!

We went to Kelling Heath in Norfolk, somewhere  we've not been for 10 years! and I think i might have imagined it a lot different to what it was or it has changed.

When we arrived it wasn't too busy, turned out that the schools in the area weren't off yet so to expect it to be very busy by the weekend! fab but to be expected. When we had visited in the past it hadn't been as busy as it got by the end of the weekend and there is one big pet hate.. and that is noise! Rules on site is that people have to be quite when its 11 but there was a big group that arrived and they were so loud well past 11! no regard to other people in the tents! I honestly felt like shoving the toddler in their part at 6 am! Also we weren't given any security numbers so had to go and get them the next day, surely the park should give that out when you get there as a given?

Due to the plot settings ours was a bit odd and set back, so much so that another little one could go in front and by the end of the week they did!  they were so close it felt like we had zero privacy and vice versa! ( try keeping a 2 year old quiet at 6 am when a tent is so close that basic talking would cause a disturbance! )

I think part of is it that we have been spoilt by our time at ParkDean in Dorset, where we got security numbers, large pitches, any issues were dealt with quickly.  Also in Dorset there was alot to do in the area. It felt for Norfolk we had to travel to get to the big things to do.

We went to Norwich which was lovely, lovely churches and cathedrals and castles, we went twice, due to the fact we couldn't do everything first time round because of Eldests issues with her joints. Which is another issues every day of the holiday she was in pain, that in itself was exhausting, I never expected her pain to disappear but to be every day sometimes with barely doing anything she was in pain. It's not a holiday if you can't even do a simple walk about the park!  It was so draining. Don't get me wrong i love her to bits but when you are trying to get out and explore and shes in agony its just not worth it. But we are not the sort to sit and do nothing on holiday.

But as you can see we did find some times that were hurting and some places to have fun! the first picture is from National Trust Felbrig hall.. where the children had more fun outside then in due to  there being lots of outdoor toys outside!  The bottom picture is youngest on a little climbing frame whilst waiting for big sis and daddy whilst at the Muckleborough collection, they went on a ride that he couldn't go on.  ( he was rather good at this wall though!)

I think for our holiday next year we are either going to go back to Dorset or along that way, we can't get bored of Dorset. If we do travel back to Norfolk we will be going further down the Coast. ( more tractors and road works to deal with though :( )

I have never come back from a holiday feeling like i need another holiday to recover and i'm not sure people will understand or think i'm just being silly. But again it's a whole new thing for us to deal with as well as eczema and chest issues flaring. I feel like i could happily go for another trip away.. just to actually rest.