Panic setting in

c4thyg

Hi everyone,

First I'd like to thank everyone for their support this last month. I'm touched by how many PMs I've had and I've tried to check in often.

Today I'm worried that I've got a flare starting. It's even hard to type today and I'm usually a fast touch typist. As you know I'm now caring for my daughter on my own and because of this I've stopped all my painkillers because they make me too sleepy. My daughter is up all night crying so I get very little sleep and I now understand why sleep deprivation is such an effective form of torture!! Coupled with being snowed in for most of the last 3 weeks with only a 3 year old for company I'm starting to lose the plot. Thankfully it's raining now so the snow might subside.

I'm feeling very run down now and have already been rushed to hospital once this week with ITP complications. They told me that I have to rest as much as possible but really that is the last thing I can do. Last night I was achy and feeling a bit flu like but this morning I feel much worse. I can't call on my parents for help as they're snowed in at the moment and can't get to me anyway. I'm panicking now because I don't know how I'm going to manage with a heart broken toddler and a flare up. I'm trying to teach her to dress herself at the moment simply because I'm struggling to do it for her. Thankfully she's keen to learn and is doing really well. I'm still trying to keep going without painkillers but I don't know how long that will last.

Sorry about the moan that kind of went off on a tangent. I can't even think straight today. I just wish that my daughter understood that kissing me better isn't always enough!

salamander

hi Cathy
Sorry to hear you are struggling at the moment, though it sounds as if you are doing a really great job with your daughter. Anyone would find it tough in your circumstances. Have you got anyone who can take your daughter off your hands even for an hour or two or can she go to nursery/playgroup for a morning so you can rest? What about your hubby, can you ask him to take her for a couple of days so you can get well again? Or even his parents maybe? You are entitled to a bit help and support now and then surely? I don't know what ITP is but do know about flares. Perhaps you should see your doctor and get some advice about medication, there may be something else you can try and they may also have some other suggestions to help you cope with this flare up.
I can see things are hard for you at the moment but you are coping well and I think you are a very strong person. You will get through this.
S xx

barbara12

Hi,
I have just read your post, you moan has much has you want, it will make you feel easier to get it off your chest.
I am so sorry that you are in pain, stress is a big cause of this , but it can't always be avoided.Wish I could help more, if you need to PM me I always here.
At the moment I have my grandchildren living with me because of family probs, so I know a bit of what you are going through.
You take care of yourself.
Barbara xx

woodbon

I'm sorry you are in such a lot of pain, it must be hard having to cope with a toddler as well. Its easy for the hospital to say rest but less easy to arrange.

Teaching her to dress is a great idea, it also is good for her, as well as you! The more independant she gets, the better for you, but I'm sure you know that as a Mum, better than me! When you'r little, every new experience can be fun, I remember my Mum letting me iron the hankies, I thought it was great when I was promoted to tea towels! I am afraid that hasn't lasted, though!!!

I hope that you soon feel a lot better and things start going right for you. Hopefully, the weather should soon improve and then, may be we will all feel better!
Take care, love Sue

valval

you say u stopped pain meds i can understand that but do u take anything for the flare up i get swelling in joints when get flare up and take anti inflams which help not trying to teach u to suck eggs just wondered what u were on think u should go back to gp and explain how things r and ask what best to take (((hugs))) coming your way and positive thoughts good luck hope things better soon

elnafinn

I agree, get back on some meds even if only anti inflams. That should help a little at least. You do have much to contend with at this time and if there is anyone who could help you out for an hour or so, with your little one, that would make a great difference to you. Do you have a neighbour nearby or next door that could help out?

Hugs to you,
Elna x

skezier

Hi Cathy,

I am sorry your feeling so bad now and hope it soon cams back down. I can't say anything except agree with what the others have posted and really agree you must get some tablets. Not all of them will make you drowsy. Pain in its self is tiring and that they can help you with. ((( ))) and hope tomorrow will be easier for you. Cris x

mmarshall

Hi, reading your post and hearing how you are trying to cope with your little girl and you are in pain brings a lump to my throat.
I hope you can work something out and someone will help you to look after your daughter and let you get a rest.
Thinking of you
Mary

frogmorton

Oh Catthy
I am so sorry you feel so awful.
I think you have to get some pain meds which will help a bit - lower dose co-cos wont make you so out of your tree and you can buy them over the counter. (8mg codeine - drs ones usually 30mg).
The paracetamol will keep your temp down - whcih might alviate some of the flu symptoms.
Also do use the dvd player and tv for the littleun - dont feel a bad Mum for doing it - it should only be short term.
When do you next see someone??
If it is a way off you need to try to get seen sooner.
Please do use us for support - I know we are not there in person but we will be here to listen to you and it does help a bit doesn't it.
This bloomin snow will go away soon too, I'm sure
Love
Toni x

angel1

It may not seem like it to you Cathy, but you are doing amazingly well in an awful situation. Being housebound, due to the dreadful weather conditions is having a bad effect on many people. It does seem to be improving now, and once you can get out and about again with Megan, perhaps it will lighten your mood. Did you arrange nursery school for her?

As others have said, please see your GP and sort out some pain control. Are you still feeling the benefits of the anti-depressants that you started? If not, maybe you can ask about trying something else.

I was concerned that, despite all your wonderful efforts, Megan is crying so much. That broke my heart. Does she still see her daddy regularly. Would it be too much of a strain for you to have him there more often? Perhaps both of you putting her to bed, reading her a story. Anything that would show her just a little togetherness, even though it`s just for her sake.

You will find your own coping strategies in time, and I hope it will be very soon....My love to you and your little one......Ange.

lindalegs

Hi Cathy,

I agree with everyone else you need to get some help with your pain ....maybe it's not the meds that are making you so tired, it could be all that life's throwing at you right now. Stress on it's own is tiring.

Pain is also exhausting that you need to get in control of it if you can if it's only a painkiller that you buy over-the-counter. Seek advice from your GP, they will be happy to help I'm sure.

Take each day as it comes and if you get chance for a rest, take it, never feel guilty having your feet up you have too much to contend with at the moment.

Take care and let us know how you're going on.

Luv Legs

woodbon

When I wrote earlier, I didn't realise that you are not taking any pain medication. You really should, as the others have said, you need it and unless you have a medical reason to stop and are supervised by the doctor, it can cause you to feel worse to suddenly stop taking them. Please, you really need something, if the car has a flat tire, you don't carry on driving it, you stop and change the wheel, so give yourself a chance, and take the meds. If you want to come off them, wait until you are in a better state and do it with help from a medic. Lots of love, Sue xxxx

c4thyg

angel1 wrote:

It may not seem like it to you Cathy, but you are doing amazingly well in an awful situation. Being housebound, due to the dreadful weather conditions is having a bad effect on many people. It does seem to be improving now, and once you can get out and about again with Megan, perhaps it will lighten your mood. Did you arrange nursery school for her?

As others have said, please see your GP and sort out some pain control. Are you still feeling the benefits of the anti-depressants that you started? If not, maybe you can ask about trying something else.

I was concerned that, despite all your wonderful efforts, Megan is crying so much. That broke my heart. Does she still see her daddy regularly. Would it be too much of a strain for you to have him there more often? Perhaps both of you putting her to bed, reading her a story. Anything that would show her just a little togetherness, even though it`s just for her sake.

You will find your own coping strategies in time, and I hope it will be very soon....My love to you and your little one......Ange.

Hi Ange,
I'm trying to find a local nursery for Meg but there are waiting lists. Pre-schools don't want to know because she has bowel problems and can't reliably use the potty, although she has reverted back to a baby like state recently and if she isn't in a nappy she just wees on the floor. Hopefully she can go to her regular nursery for her 2 days next week. We haven't been able to take her for over a month because of all the snow. She really misses her friends because I can't run around with her like they do. I think maybe I should call the health visitor and tell her what's happened. It's all a bit difficult though having just moved to another county. I don't know anyone locally, I've only been here for 2 months and mostly snowed in!

The ADs are working really well otherwise I think I would already have lost the plot. I'm thinking clearer than I have in years. This is partly why I'm reluctant to take the painkillers, they make me fuzzy headed and I can't afford to be at the moment.

Meg is seeing her Dad about twice a week and when the snow clears he'll do the nursery run as well. I'm really worried about her as she seems to think that being a good girl will bring him back. That implies that she thinks she's been bad and that's why he left. She keeps telling me to say sorry and give him a kiss and he'll come home. Not only is that hard to hear but also hard to correct with a 3 year old. I've started to be cruel to be kind which is really hard. When she cries for Daddy in the night I'm not going in unless she's really distressed. I think she has to learn that when she calls he's not going to come and that's the only way I know how to do it. If she calls for me I'm going in as usual. It's not easy to do though. Tomorrow he's taking her for the morning and hopefully I'll get a few hours sleep. In the afternoon we're going shopping together (all 3 of us) to try and show Meg that we are still a family even if he lives somewhere else. I've also ordered some books for toddlers about divorce but I haven't seen them yet to see if they might be suitable. I hope she settles soon because it's really hard to keep this up and I don't know how long I'll keep my patience without sleep.

c4thyg

elnafinn wrote:

I agree, get back on some meds even if only anti inflams. That should help a little at least. You do have much to contend with at this time and if there is anyone who could help you out for an hour or so, with your little one, that would make a great difference to you. Do you have a neighbour nearby or next door that could help out?

Hugs to you,
Elna x

I'm managing the pain ok for now. I can't take anti-inflammatories as my blood doesn't clot. It's a shame because they never made me feel spaced and worked well for years. I'm on the anti-TNF treatment which has really helped with my joints. I think I need to switch back to enbrel though as that was also beneficial for my blood whereas humira doesn't help there. The problem with flares is that they are usually caused by infection and then I can't inject until the infection clears and antibiotics make my blood worse. This really isn't a good combination of medical conditions to have!! My priority at the moment is to get my blood stabilised as when I was sent to hospital I had bled so much for the last few weeks that I was extremely dehydrated (they couldn't get blood from a vein in a haemophiliac!) and anaemic. Arthur to me is just pain but not life threatening. No offence to anyone, I know how awful it is to live with but at the same time it won't kill me.

I know that the biggest trigger is stress and I can say hand on heart that I've never been so stressed in my life. I'm trying to get things sorted as quick as I can to try and reduce the stress. I asked my parents if they could take Meg overnight sometime for me but my mother says that she couldn't cope with her at the moment. I can't complain as she is severely disabled herself and cares for my autistic brother as well. It's a lot to ask of her. I think I should probably get the health visitor involved if Meg doesn't start to settle soon. I don't know what else I can do for her.

annie_mial

Cathy, I can't add any more to the responses that the others have given, but will repeat that you are doing a wonderful job against very high odds.
Keep trying to organise respites for you and for Meg; if you can get away from each other for small amounts of time I can see that it will do both of you good.

Love and praises
Annie

tkachev

I really feel for you Cathy.But the nursery is supposed to take children in nappies, or bowel probs nowadays.I know this cos my son was in nappies until 8 and daughter has had ongoing bowel probs since a baby.She had a nappy even in reception but she had to go to playgroup cos I needed the break,infact they gave me a place over others on waiting list mostly cos of my health probs.They arent allowed to discrimate against nappy wearers!
You do need to get pain under control but understand your need to keep awake as you are in sole control of Meg.Just worry about quality time together...stories,pretend play where you can sit down.I do realise it is difficult when you cant think straight but Children play up when they arent getting the right vibes and then it is a vicous circle.
Take care,reassure her and praise her as she is feeling very vulnerable right now.
Elizabeth

c4thyg

It's good to hear that others have had children in nappies being accepted in pre-school. Things seem to work differently in this county and I'm very much finding my feet again. I think it might be a good idea if I found out who our new health visitor is and ask them about it. I would hope that a HV would be able to advise both me and the school. I'm hoping that I can afford to keep Meg in day nursery for at least one day a week because as an only child I feel that she needs to see other children and to be able to run around with them. My parents are going to try and take her for one day a week for me to do my errands and get a rest if needed but we haven't yet organised that due to the bad weather. They live up the mountain next to where I am. It's only 1/4 mile away but sometimes feels a long way off, especially in bad weather as my lil car can't get up the lanes in this!

I've been on the phone to the benefits office today and it lasted 1 hour and 15 mins!! My case is complicated so I have to go for a face to face interview at the job centre next. If everything goes through quickly then I might get some money to live on in 6-8 weeks!! Until I get income support sorted I can't apply for anything else! So it looks like it'll be months before I know what income I will have. All this just adds to the stress. To top it off hubby just told me that he's put a deposit down on a flat for next month. I don't know how the money is going to stretch that far. We moved to this house because I lost my job and now he's taken on another place because he doesn't want to live in our family home while it's on the market. Talk about having you cake and eating it. I don't think he's thought about how we are going to manage. He acts like if he snaps his fingers things will just happen. Then again I've always known that I'm the saver and he's the spender. So now Meg is in bed I'm now sorting out paperwork ready for the job centre interview when really I would prefer to distract myself before going to bed. It's no wonder I don't sleep.

And now that's off my chest it's time to get back to my paperwork.

tkachev

I dont think I paid for our nursery place!Is K getting a wage and paying for his own flat?You will need to work out child payments from him and contribution to mortgage.That is why you might need a mediator or solicitor.Hopefully income support wont take a longtime.You can claim Child tax credits if your income is not high.his income shouldnt count now he has gone.
I remember ex got his flat arranged first before worrying about us!
Best wishes
Elizabeth

page35

Hi Cathy sorry you not feeling well
i sent you a PM late last night without seeing this thread so i hope it makes sense :roll:
my playgroup take kids in nappies no props, hope you can find one for Meg. the HV could help with that or libraries normally have info about stuff going on locally.
take care

suziev

hi hun

am not surprised you feel like your getting a flare up!
i think you have had some good advice, you seem to be heading in the right direction, getting sorted with paperwork etc. it does take time but you do get payback from the time you claim.

i wish i could give you some advice about meg, i think that must be the hardest her being so upset but it's got to get better, you just have to ride this storm out.
in england children have a place in nursey from the age of 3 five morning a week for free, not sure it's the same in wales. HV should point you in the right direction.

you will get there in the end, it just looks like a long glommy tunnel but there is light at the end of it i promise.

keep your chin up pet
love suzie x

c4thyg

tkachev wrote:

I dont think I paid for our nursery place!Is K getting a wage and paying for his own flat?You will need to work out child payments from him and contribution to mortgage.That is why you might need a mediator or solicitor.Hopefully income support wont take a longtime.You can claim Child tax credits if your income is not high.his income shouldnt count now he has gone.
I remember ex got his flat arranged first before worrying about us!
Best wishes
Elizabeth

We have come to a financial arrangement that we'll have to review in April. Hopefully our empty house will sell soon as that would make claiming much easier. The equity will go against me even though I can't actually use it! He couldn't have picked a worst time to do this if he tried!

I've got the forms being sent to me for child tax credits but i won't be able to get anything until income support is sorted out. At least is gives me a head start on figuring out what I need to do with the forms.

As for hubby, he's still working so he'll be paying for all his things and the mortgage on the other house. He's also paying my utilities for another month while i get things sorted. It's a good thing we had some savings because once the transfer goes through I'll be living off them. He's being really good about things because he still claims that I've done nothing wrong and I think guilt is a big part of it. I understand how things went wrong but even if we did it over there would be nothing I could do to change things.

I think yesterday was a turning point for me. We all spent the day together as when he had Meg his car broke down across town and he didn't have anyone else to call for help. I ended up on their playdate with them and Meg had a great time. She even sleep for most of 12 hours last night!! :shock: I even commented that he hadn't been that nice to me for a long time. If this is how we are when we live separately then it has to be for the best.

angel1

It`s good to hear you sounding a little more positive Cathy. I am so pleased that it helped Meg, having her mummy and daddy together.

I remember you saying in one of your earlier posts that you would miss Kev so very much, as your best friend. I feel that if everything is handled sensitively, you will not lose that friendship, especially as you both want what`s best for Meg. As time goes on, she will accept, quite happily, that mummy and daddy don`t live in the same house, but that they both love her very much. In my work, I find more and more children living their lives - albeit very happily - in this way. Sadly, it`s the way of the world today.

Again, I have to congratulate you on the mature way you are dealing with a situation, not of your making, and that you never envisaged. My love, as always to you and Megan........Ange.

tkachev

Hi Cathy,
I was certainly glad I had savings in my sole name as it enabled me to make decisions for the benefit of the girls and I.your savings should help until income support is sorted out which will be backdated.
I am pleased you were able to spend time together as a family and Meg benefited from it.Hope you slept well too.
Best wishes Elizabeth.

skezier

Hi Cathy,

I think your dong really well and I hope things will sort out soon with Meg's child care and the financial side. I can't help much but am sending you a ((( ))) and a hope things get easier. Cris x

pols090607

Hi Cathy,

As a Mum of two myself I know how hard things can be, so well done on what such a great job you are doing.

I find that having a shower first thing helps me loosen up, even though I don't feel like it with stiffness but I force myself to and also having a bath of a night when the kids are in bed, this helps my body relax and wind down for a better nights sleep.

Have you tried heat pads / ice packs, these things can be strapped onto you during the day and what about splints etc ?

Not sure if any of this will help, you're probably already doing this anyway but just wanted to offer some support.

TAke Care xxxx