Support?

You know when you just want to bang your head out of fustration? I felt like this last night. I felt torn over what to do and actually what to say. I run a Eczema support group on Facebook (Literally Eczema Support if you want to come and join us) but on this group, I do not allow/ condone selling of any sort and financial gain from referrals. People suffering from Eczema and looking after those with Eczema would literally give their right arm to try something new to help. Often sleep deprived is it right that people come and try selling this new miracle cream with barely any pictures and stories which can be sometimes hard to believe? I'm all for wanting to try something new but i need facts, figures, pictures fgs!!

So last night two people were taking off, not by me as I was too chicken but my admin and sis who like me thought it was a bit dodgy and selling.  It just gets me so wound up and yet these people think its okay to come and do this and don't see any problems.

I saw this yesterday, and I thought it struck home a bit :

I feel this is particularly poignant as sometimes I do not know how I can keep going with my daughters Eczema and I know this sounds overly dramatic but it's constant. A continuous fear, whats going on, whats causing it. is this cream working, is it infected, why can't she sleep etc! but at the same time as her Eczema she has these other issues with her legs which I have said before. I'll admit I have spent many times crying over the situation and crying on the phone to my mum wondering why this was happening and that I couldn't cope. But here I am. So all the normal fears of a mum with extras on top!! No i'm no super mum, i shout and scream and paddy if i have to too and sulk as my hubby would agree. my escape include a long quiet bath with a book and chocolate! ( No chocolate in the bath though) 

It's Thursday again and so I've been blogging for two weeks, thank you for staying with me, I appreciate the support and hope I've not bored anyone too much, those who have given me feedback have been positive without bribes :)  so i'm not stopping any time soon! We have the grand choice today of doing origami at the library craft session, or going to schools pop concert. Hrrm I know what id rather!! But letting daughter decide as its her crafting sessions etc. Watch this space! all week she has said Origami but i feel this might change!

I hope today isn't as annoying as the latter end of yesterday. Have a good day whatever you are doing x

 

Christmas in July?

No really I know it is 5 months away and please don't shoot me for bringing it up, but I am not sure if I am super organised or just plain pathetic that I have bought another two.. yes thats right "another" presents for my daughter.

Don't get me wrong these aren't huge things and I was not planning on getting her lots for christmas as after all we are on a budget ( Isn't everyone?) But I keep seeing things in pesky stores like Home Bargains!

Found both of these in Home Bargains for £1.99. Pretty sure the Moshi Monster game is meant to be cheaper so I shall check later in the week! but for that price I honestly can't walk past them and wait for closer to the time because they would be gone. Didn't realise the Xia Xia thing didn't actually come with figures but I'm hoping they are easy to find. Good old Ebay might help me there! And if it means I am not spending a fortune and my daughter get's things she will actually play with and use then I am happy. And so is my bank account lol. Only the other week I bought lots of little push out things for Moshi Monsters, the full set in HB and it was under £7.. I love this shop!! 

According to the weather today it has cooled down a bit... doesn't feel like it, especially after walking up to the drs, round to the shops and home again! phew. Speaking of the drs I am not impressed ( I know am I ever?!) last week when we took the little man in for his croup, i asked them about some bandages my daughter needs ( see previous bandage regime!) and got told no letter had arrived from my dermatologist. Except something in June which  I thought was just regarding the childrens appointment. Oh no.. there were several pages attached according to the receptionist today, who helpfully  printed it off so I could see and we were able to order the right bits. I just wish it wasn't such a pain to do! Why should it have to be a fight all the time :(.   I've been a receptionist and was never as rude as some of these. Being polite goes along way especially when its a concerned mum! 

Right whilst little man is asleep i better go and hide these toys and perhaps get something productive done other than my blog.

Enjoy your day!

Melting!

Oh golly gosh I am so not use to this sort of heat! I am aware other countries have it alot hotter but 28 degrees with humidity is ugh!! too hot. Yes I am one of "those" brits, I do not like it hot. Cold I can deal with as you can wrap up and use blankets etc. There are only so many layers you can take off before there are no more!

Finally had a call from the clinical nurse yesterday, only taken her a week and a half to get in touch. she has discharged my little boy ( as they can't keep them on unless there is specific treatment) and we are going to see how he goes. No one seems bothered however that he seems to get a illness/ cough etc straight to his chest every couple of weeks. It's not right! But shall have to see how he goes. This cough he has at the moment should be going within a week.

Not sure I can function to post a blog its too hot! lol, Ice creams aren't working and soon running out when both children want one and then yourself and that's before hubby comes home! Would go and sit in the garden but it's roasting out there and no shade to sit in. (under the parasol not helping!)

Had a lovely time at play group this morning and was very brave! I wore a dress, gasp, shock horror and all that. But I did it,  I was brave and seeing as i have some real issues with body imagine I think I did well! no comments or even stares! Then again I am sure there are worse sights in town.

That was from this morning when I was slightly less brave and had a shawl on but it grew too hot for that! 

Finally managed to get the children into bed, though I see a long night ahead tonight, it is so muggy and warm. Already got bandages on my daughter which won't help anything. She is so red raw :( Even little man was coming out in a rash of sorts today. times like these I wish i could take it away from them. I also feel like I am a failure, I know I'm not and that I am doing my best for them, but no one wants to see their child suffer. All she wanted to do was go into the paddling pool and I said no as her legs were weeping, so much so she was struggling to walk home!! we only live 15 minutes walk from school ( childs pace). It's heart breaking!! 

Hopefully it being slightly cooler tomorrow might help, or I might have to start giving her daily showers ( I don't normally as it irritates her skin). just anything to help! Another week before we have pediatric and dermatology appointments ( and end of school!!). Roll on another day! 

No Monday blues today!

No Monday blues today, it's too sunny to be upset or down because it is the start of the week! Had a decent weekend, the weather was lovely, had some nice friends of hubbies over ( not sure if i can say mine yet lol)  Got a few bargains. Only problem has been daughters eczema really which I have already discussed over the weekend and this morning in the other blog post.

No one seems to believe me when I say hot weather really does cause her damage. I don't want to keep her locked away but at the same time running around, sweating, rolling in grass etc is driving her skin nuts! Told the teacher today, as well as my daughter that she can't be rolling around in the grass as she was a mess after school Friday. Thank fully it's not as messy today but I've had to send her in bandages, ( tubifast) just to cover up the worst bits and to try and prevent any bad contact, especially since her knee was weeping already this morning. :(

She swam her first gala yesterday and we are so proud of her, three girls in each race and yes she came last, and didn't win anything but she tried and she was a big girl enough not to get upset. She did so well and the girls swimming with her were two stages above where she is as well as having had private lessons. So considering my little girl has only been swimming since Oct she did fantastic! Only thing we weren't overly happy about is that we had to pay to watch. Having not been before this was a shock coming through the door and we had to scrimp really really scrimp in my purse to find the right money! Thank goodness we had it! But I suppose this is the problems with going cash less these days? Least we know for next time. It was so warm in there though! little boy was soaked with sweat after :( Also he wanted to nurse and I was not comfortable with so many people around O_O.  Not that it's anyone's business what I do but not in such close proximity!

Also very proud of my little sister in law who is only 7 but just barely missed out on being 3rd in her race. She did really well as the girls swimming with her are also older than her! sure we have a couple of fish in the family, or is it mermaids? ;)

got the leap frog toys and so glad we did as my little boy loves the lap top! other toy needs new batteries but no biggie. Love swapping/ buying sites! on that note finally sold the other dresses I had on ebay, brand new never been worn.. bloody lucky buyer getting them for £2... I paid £10 for the two. but oh well as long as they are used and are going to someone who really needs a all cotton dress ( which are harder to find then you think!! )

Going to crack on with the house hold chores.. or go and sit outside in the sunshine! Have a lovely day.

Bandage regime!

Just thought I would show a selection of pictures and things that are involved when it comes to having to bandage my daughter with her severe eczema. This use to take up to and over an hour especially when I was doing all four limbs. Yesterday I only did one arm and one leg.

The selection of things needed to carry out the work. Dermol cream (the only moisturiser that works for her! ) normally i put steroid cream on as well but didn't yesterday as I forgot! Viscopaste bandages or as they are known in the house, "cheesy" bandages. Don't ask but my daughter came up with it so we let her keep the name! a normal bandage for over the top of the cheesy one, micropore tape, scissors to cut up the viscopaste and normal bandage and last but not least green or blue line tubifast bandages depending on where you are working on! blue for legs, green for arms.

So first the cheesy bandage! this is a tricky one and you can't do anything else whilst working with it as you get covered in paste! with these ( which are normally used for leg ulcers!) you have to zig zag back and forth over the bandage first one way then the other. So it doesn't fall down apparently! Never just wrapped it round so I don't know if it does! 

This is with the normal bandage over the top, trying to make sure that she can still bend her arm afterwards! 

 With the tubifast bandage over the top! can't see the green line here but this is all done! ( the picture above)


 The one on the right is of her leg.

So going off the picture i posted previous of the back of her leg, this is the result after two hours! ignore the little white bits it's just the residue from the viscopaste!

Nothing to do with the above pictures but this is my poor babies neck yesterday, covered in eczema and little spots that i think we have been told before is the start of an infection. It did look better after being in the pool however!

Quick I have five minutes peace!

07:30 am... and all through the house, not a creature was stairing( can't spell and spell check not helping! forgive me I am dyslexic!), not even a mouse, apart from mummy that is. Who has been awake for about an hour and yet children and hubby are asleep. So I've snuck down stairs to have a coffee and bowl of cereal in peace, half wanting to be sat outside in the garden as I type as it is glorious outside. The sun is out, the birds are singing and if it wasn't for the fact the chairs would be wet with dew point i'd be out there. .. plus if little man starts screaming in bed I won't be able to hear.

Was a good day yesterday, apart from the Eczema monster, and the fact my little boy is still coughing badly. My daughter's Eczema as I updated yesterday prevented her from going swimming, I didn't have time to put on bandages to be able to get her into the water ( zinc bandages are a miracle sometimes!!) so as I didn't have time last night either with having people around, I'm going to put them on first thing and take them off before we go out. generally after two hours they have done their job. Fingers crossed she will be able to go to her little gala as she really wants to go! I just didn't want to put her through the stress of going into the chlorine water with broken skin. ( ouch! )

We did instead go to the school's garden party/ summer fair. Which was ok but couldn't spend more then an hour their really. Rhiannon came out really well though, did three tombolas and she won each time, a bag of Haribo, a box of Thorntons chocs.. ( no mummy has not snaffled them....... ) and what she has wanted for a while... a hoola hoop. We were only that morning discussing getting her one as she wanted one and hubby didn't want her wasting money on the toy stall to have a go but i said no its okay and she won one! lol of all things. We were good however and resisted the cakes! We did however buy books.. which is silly as we have a house full which I keep culling and sending to the charity shop. And I hate doing that as I love books!. If I had the room I would have more book shelves!

Stated we got some bargains in Tesco yesterday, we got some garden chairs for £5 each and they are really nice and fold away ones which we are thinking of taking away with us when we go Camping. All we need now is a table! So might see what we can do.

Speaking of Summer, my daughter nearly breaks up from school. Literally we have 8 days left in school ( 9 for any other school mummies from SP's reading!). My little girl only has 8 as we have a hospital appointment on the last day and I have been told they will finish early as well. I am not rushing around  trying to get from Wigan to Leigh with a cranky child who will probably have to have some blood taken to go to school for an hour. School know this. And besides we have been booked onto a over booked clinic so I can't see us being on time anyway! it's a good 40 mins on the bus back to school from the hospital. Also I will have youngest with me so will be stressed! All fun when being a mum. Ugh the thought of it all makes me cringe! Last time they had to take blood she tried to hide in the toilets! they can't use any numbing spray on her arms due to how bad her eczema is, so it really stings when they do it, and because they can't  get any blood out of the veins in her hands they have to go for her arms. Hate it!! I normally have two children screaming at the end of it all.

Someone swap with me.. please!

I was speaking of Summer, I can't believe the school year is over already and that my little girl is going into Year 1. Though I think they are going to come down with a bit of a bump as they won't have their little outdoor play area or as much play stuff to do.. its more structured! bless, I hope they cope come September!

Right before i waffle on too much, today its a quick nip to Asda for any bits we didn't get yesterday, popping over to a house where I should be buying a Leapfrog Laptop and hand held thing, practically brand new for a really good price!  And to the gala to see if we can  go!

Enjoy the sunshine, today its going to be very high pollen and hotter then yesterday ( and I didn't burn haha! ). Have a great day!

Whoo hoo weekend!

I don't generally look forward to the weekend, sometimes they are so busy filled with stuff we can't generally do in the week that it doesn't seem like much of a rest, more of a argh! we need to do x y z whilst I have hubby home with the car!

So today is my daughters swimming lesson, which she really enjoys and I'm glad we are able to provide for her, though not always cheap as paying for it comes at different times in the month as it is in a 10 week cycle! but we've managed it so far since last October! she is really good on her back, so much so we say she has a torpedo strapped to her. But the main thing is she enjoys it. Doesn't do any good for her skin however, she comes out seriously dry! ( I know it's odd). Speaking of which she had a shower and nearly screamed the house down her knees were so bad. So glad we didn't choose to give her a bath. Only problem then was that she woke her brother up :( Oh the fun!

I said that the heat doesn't do her skin any good and it was proved yesterday she comes up with funny white spots on her eczema when warm and she even came up with new patches of these on her neck. I think with wearing her dress, people can see and appreciate how bad it is even with all the creams that get put on. Doesn't help that school let her roll around in the grass... come on!! why would you let someone with severe eczema do that? But as her teacher said she doesn't really let it bother/ stop her. And she doesn't she's so use to having eczema now she just gets on with it. But sometimes I wish she would stop and appreciate how bad it is. I know that is an odd thing to say and it's good that it doesn't bother her but not sure she fully understands that she needs cream on all places and not just the little bits.

I promised a picture of my approved food box yesterday and so here are two, it came in a huge box with four little boxes in, and I could have packed it better.

 Now I know there are alot of cakes in there, but as I said previously I am going to be putting one little one into lunch boxes and hubby can take some if he wants. And for a change something for me to eat at home. Apparently I saved £30 on this box compared with normal retail prices O_O I would not have spent that much on it, let alone the full amount it should have been. Don't get me wrong there are alot of things in there. It includes water bottles in there for madams lunch box too and I will be taking some things in there for camping. The olives are already eaten lol but seems an awful lot of money for not alot of items.

Going to go enjoy the sunshine today ( whilst taking precautions, duh) just becareful out there, as pollen is high, or very high depending where you are! the sun is strong, even if you don't have a high temp where you are. And yes i'm mothering people as it's my job day in and day out ;) take care x




** Little update, didn't take daughter to her swimming lesson as her eczema is too bad to contemplate her going into the water, considering she was screaming in the shower. So  we are just going to the school garden party instead. Have been and got some new garden chairs, a bargain in Tesco ;)