And other stuff.
I have become an awful parent.
Let me explain the first bit though.
Right, this is all kinda connected. I have fibro, ehler danlos and arthritis and I am 29.
A few weeks ago, ALL 3 daughters were diagnosed with Ehler Danlos Syndrome and it looks like one of them also has fibromyalgia. I am GUTTED. I wasn't diagnosed until after I had had my first 2 children and DD2 and 3 weren't planned anyway.
It is hard work, it looks as though DD1s speech and potty issues may be related to the EDS, she suffers from sore joints too. She is 6 in 9 days time.
DD2 is overly sensitive to noise, bright lights etc, has IBS, can't sleep properly etc etc etc. She can wake up in so much pain she can't walk (although it is too often thank god), sometimes her stomach is bothering her so much she can't walk and other times she will be happily playing and all of a sudden scream and start crying because of her back. We had to call the emergency docs once because her IBS was so bad all she could do was scream. It was awful, she is 4. She also gets a lot of head aches.
DD3 is just sensitive to everything and cries a lot, like pretty much day in and day out, she is 1 and 1/2.
I feel so bad about all of this, I passed this on to them and I feel so guilty.
To top it off DSS is possibly dyspraxic and dyslexic so that can be pretty hard seeing as we home school so we are dealing with this 24 hours a day.
DH has his health problems which mean he heeds injections in his shoulders, he is on tonnes of morphine and other pain relief.
Then, there is me. I have had a nightmare of a year, with Docs messing around with my meds, pregabalin, duloxetine, all of which have made me suicidal and totally messed with my mood so I have been taken off them again. I have anti depressants changed several times in a matter of a few months and now weaned myself off them. I am supposed to be coming off of morphine but I am in so much pain and the Docs are being a PITA about sorting me out properly with alternative pain meds. There are reccomended ones and they won't give them too me and its reached the point that when I get into the Docs room, I am just bursting into tears because f=they don't believe I am in as much pain as I say I am and they keep saying I am depressed which I am not, I am just really fed up of the pain, the way it is affecting my relationships and its anxiety at being at the Docs which is making me act so weird when I am there.
I am so irritable right now because of the pain, I don't like to be touched because it hurts me, even my hair follicles hurt, burn. All the time I am just knackered and hurting and with the docs being useless, its just making things worse, if its not one doc saying there is no magic cure (which I know otherwise I probably would have had it by now) they are saying its caused by my depression even though the rheumatologist diagnosed me with things that cause pain and are not in my head.
The girls always ask for their dad, not for me, or for the step son and it is totally sucking. I can't hold the baby much because my legs can go from underneath me and it hurts to carry her. Even sitting down with them and doing crafty things causes me pain and no one seems to be understanding this, especially the docs who are supposed to be helping me.
I just don't know ho much longer I can put up with this. I know I sound depressed, I am not, I do feel like offing myself, but again, its not because I am depressed, I am just so tired of the fatigue and the pain and feeling so damned useless but most of all, I am angry at the Docs for not helping me with my symptoms, they are always dragging their feet even though I have given them loads of literature, even on the NHS website it shows recommended medication.
What a bloody moan lol........ But I have zero friends, hardly any family and I am just finding things hard at the moment, especially when I see the kids in pain as well and knowing its my fault and then being so snappy with them when its not their fault I hurt etc.
Aaaaaaaaaaaaargh.
I have become an awful parent.
Let me explain the first bit though.
Right, this is all kinda connected. I have fibro, ehler danlos and arthritis and I am 29.
A few weeks ago, ALL 3 daughters were diagnosed with Ehler Danlos Syndrome and it looks like one of them also has fibromyalgia. I am GUTTED. I wasn't diagnosed until after I had had my first 2 children and DD2 and 3 weren't planned anyway.
It is hard work, it looks as though DD1s speech and potty issues may be related to the EDS, she suffers from sore joints too. She is 6 in 9 days time.
DD2 is overly sensitive to noise, bright lights etc, has IBS, can't sleep properly etc etc etc. She can wake up in so much pain she can't walk (although it is too often thank god), sometimes her stomach is bothering her so much she can't walk and other times she will be happily playing and all of a sudden scream and start crying because of her back. We had to call the emergency docs once because her IBS was so bad all she could do was scream. It was awful, she is 4. She also gets a lot of head aches.
DD3 is just sensitive to everything and cries a lot, like pretty much day in and day out, she is 1 and 1/2.
I feel so bad about all of this, I passed this on to them and I feel so guilty.
To top it off DSS is possibly dyspraxic and dyslexic so that can be pretty hard seeing as we home school so we are dealing with this 24 hours a day.
DH has his health problems which mean he heeds injections in his shoulders, he is on tonnes of morphine and other pain relief.
Then, there is me. I have had a nightmare of a year, with Docs messing around with my meds, pregabalin, duloxetine, all of which have made me suicidal and totally messed with my mood so I have been taken off them again. I have anti depressants changed several times in a matter of a few months and now weaned myself off them. I am supposed to be coming off of morphine but I am in so much pain and the Docs are being a PITA about sorting me out properly with alternative pain meds. There are reccomended ones and they won't give them too me and its reached the point that when I get into the Docs room, I am just bursting into tears because f=they don't believe I am in as much pain as I say I am and they keep saying I am depressed which I am not, I am just really fed up of the pain, the way it is affecting my relationships and its anxiety at being at the Docs which is making me act so weird when I am there.
I am so irritable right now because of the pain, I don't like to be touched because it hurts me, even my hair follicles hurt, burn. All the time I am just knackered and hurting and with the docs being useless, its just making things worse, if its not one doc saying there is no magic cure (which I know otherwise I probably would have had it by now) they are saying its caused by my depression even though the rheumatologist diagnosed me with things that cause pain and are not in my head.
The girls always ask for their dad, not for me, or for the step son and it is totally sucking. I can't hold the baby much because my legs can go from underneath me and it hurts to carry her. Even sitting down with them and doing crafty things causes me pain and no one seems to be understanding this, especially the docs who are supposed to be helping me.
I just don't know ho much longer I can put up with this. I know I sound depressed, I am not, I do feel like offing myself, but again, its not because I am depressed, I am just so tired of the fatigue and the pain and feeling so damned useless but most of all, I am angry at the Docs for not helping me with my symptoms, they are always dragging their feet even though I have given them loads of literature, even on the NHS website it shows recommended medication.
What a bloody moan lol........ But I have zero friends, hardly any family and I am just finding things hard at the moment, especially when I see the kids in pain as well and knowing its my fault and then being so snappy with them when its not their fault I hurt etc.
Aaaaaaaaaaaaargh.
I wish I had some magic words to help.
