So we arrived safely in Skegness, I was glad the journey had ended. I think H and D were also relieved.
So everyone said their hellos and gave H cuddles and kisses. For the most part of the afternoon she was fine if not a little off colour but I suppose with her jabs that's to be expected. However, when A went to pick her up from her chair she started screaming and crying. There was no consoling her. It took me half an hour to calm her down.
I tried to give her calpol, admittedly she spat a fair bit back at me, can't blame her the bloody stuff is awful. Finally she settled a little and I managed to feed her a bit, she started falling asleep. Great I think only half an hour behind schedule.
The word jinx comes to mind, as well as minx. My back was spasming my legs were jerking out of control. I was ready to cry. I was also worried that H was going to puke everywhere with the bouncing about. Nope seems she enjoyed that.
So after ten minutes of sleep the minx is wide awake again. In between trying to figure where we are going to fit the travel cot and making our bed up she is flitting from crying to laughing. Dribbling, pulling on her ears, biting at anything in site. Yup, definitely a teething baby.
So its 10 o'clock now we have put her in her travel cot, not that that's going to deter her from having a good night! She is happily squealing kicking her legs up and down in the air and moving about and punching her arms out.
So time to see if a warm bottle may make her sleepy. Although I will now be passing the reigns over to daddy as mummy needs to take her tablets. I'm beginning to wonder if doing this journey was the right thing to do.
I will give it a day or so and depending on how I feel, and how H is we may just have to cut it short. It seems to me the only thing that's helping with the spasming of arms and legs and persistent pain, is pretty much total bed rest. Which is completely gutting. I don't want to go home but fear if this carries on I will have no choice but to!
This can't go on. I won't be able to look after H on my own if this doesn't get sorted soon. Rather than getting upset about it. I'm starting to get really mad at the nhs at the fact that if you want something done quick you have to pay. Most of the time its an nhs doctor your paying, so in essence your jumping the queue, it would seem that if you have the money you get better treatment.
Showing posts with label nhs. Show all posts
Showing posts with label nhs. Show all posts
Wednesday, 3 August 2011
Thursday, 14 July 2011
A Better Day
OK so I will admit I woke up on the wrong side of the bed. Snappy, irritable and ready to bite someones head off at any given opportunity. Sadly my husband seems to manage this very easily.
Anyway today I was waiting for a phone call from the doctor. They refuse to do home visits unless you are elderly. Doesn't seem to matter that I am disabled and some days bed bound. Meaning my blood tests I was supposed to have never happened.
So when she rang I asked about a referral to a private hospital and straight away she agreed that may be wise because of the waiting lists, although I wonder if that's because she thinks she wont have to put up with me!! So anyway she was asking for a list of symptoms. After everyone she was saying is that it? Erm nope theres a BIG list of them.
I mentioned that a friends of mine has ms (bit of a fib, but its been playing on my mind) and has said that my symptoms are similar to some of hers. At that the GP paused and then agreed that, with how fast things were deteriorating she felt that I was in need of a brain MRI to see if there is any nerve damage as she believes that my problems are definitely do to with nerves.
However, she warned me that she is unable to order this test. Apparently there are strict rules and because of what the orthopaedic surgeon said she can't really go against that. But if I see a neurologist privately and he suggests an MRI and we can't afford it privately the NHS will have to listen and take his advice as if they don't they could be liable for a law suit.
I have an appointment on the 28th its two weeks away. Bit of a pain was hoping to get in next week, but two weeks is a damn sight better than two months. It really frustrates me that I have to pay privately before anyone will take me seriously! Also the fact that these consultants are on the NHS normally. I am seeing a professor the best of the best hey?!
The doctor also suggested increasing my anti-depressants, which i agreed to. Then she asked for a list of the things I am running low on. Seriously its like a pharmacy in my room at the moment! I try not to take them during the day as I don't want to end up addicted to them. Sadly though the pain has reached a level whereby this is no longer possible.
So this afternoon was the appointment with the surgeon. After my GP had turned around and told me that she didn't feel that my gallstones were big enough to be a problem and that she felt that they wouldn't remove my gallbladder even though I need it out to start on my medication for my skin and joints. I was ready for a fight.
That readiness for a fight increased when the wait jumped from 30mins to 1hr to 2hrs we were the last to be seen. He simply walked in sat down, asked me what medication it is they want to start me on, which requires the gallbladder being removed. The fight went out me like a whoosh of air. He had read my notes! Good sign. He seems to be on my side.
He wasted no time in telling me that he would recommend the surgery be done by himself, the waiting list is 4 months however, they often have cancellations, that no-one wants to take would I want one of those at short notice? HELL YES!! Get me in! Whip the bloody thing out. I don't want it or need it. I want to be in and out and then I am one problem down only half a dozen left ha ha!
So this has left me feeling more positive. Not all doctors have their heads up their arses and no bed side manner, some are nice. He explained the possible complications gave me a leaflet and for the first time in a long time I left feeling reassured.
Don't get me wrong I am still nervous about having an operation especially since when my tonsils were taken out I woke up on the operating table.. another story for another day..
Oh and H was amazing she was quiet and used her whisper voice to chat in the waiting room she didn't whinge or cry. Until the nurses tried talking to her seems she has something against them. Bottom lip comes out starts to tremble proper baby tears and everything. My theory is she associates them with her jabs I don't know or maybe its something about the uniform. Just coincidentally that the past two nurses when they tried talking to her made her cry! Shes not a baby who makes strange with new people. She normally doesn't care as long as you feed her and cuddle her, oh and lets not forget continuous singing of row row row your boat. If you sing it about 20x you get a laugh!
Anyway today I was waiting for a phone call from the doctor. They refuse to do home visits unless you are elderly. Doesn't seem to matter that I am disabled and some days bed bound. Meaning my blood tests I was supposed to have never happened.
So when she rang I asked about a referral to a private hospital and straight away she agreed that may be wise because of the waiting lists, although I wonder if that's because she thinks she wont have to put up with me!! So anyway she was asking for a list of symptoms. After everyone she was saying is that it? Erm nope theres a BIG list of them.
I mentioned that a friends of mine has ms (bit of a fib, but its been playing on my mind) and has said that my symptoms are similar to some of hers. At that the GP paused and then agreed that, with how fast things were deteriorating she felt that I was in need of a brain MRI to see if there is any nerve damage as she believes that my problems are definitely do to with nerves.
However, she warned me that she is unable to order this test. Apparently there are strict rules and because of what the orthopaedic surgeon said she can't really go against that. But if I see a neurologist privately and he suggests an MRI and we can't afford it privately the NHS will have to listen and take his advice as if they don't they could be liable for a law suit.
I have an appointment on the 28th its two weeks away. Bit of a pain was hoping to get in next week, but two weeks is a damn sight better than two months. It really frustrates me that I have to pay privately before anyone will take me seriously! Also the fact that these consultants are on the NHS normally. I am seeing a professor the best of the best hey?!
The doctor also suggested increasing my anti-depressants, which i agreed to. Then she asked for a list of the things I am running low on. Seriously its like a pharmacy in my room at the moment! I try not to take them during the day as I don't want to end up addicted to them. Sadly though the pain has reached a level whereby this is no longer possible.
So this afternoon was the appointment with the surgeon. After my GP had turned around and told me that she didn't feel that my gallstones were big enough to be a problem and that she felt that they wouldn't remove my gallbladder even though I need it out to start on my medication for my skin and joints. I was ready for a fight.
That readiness for a fight increased when the wait jumped from 30mins to 1hr to 2hrs we were the last to be seen. He simply walked in sat down, asked me what medication it is they want to start me on, which requires the gallbladder being removed. The fight went out me like a whoosh of air. He had read my notes! Good sign. He seems to be on my side.
He wasted no time in telling me that he would recommend the surgery be done by himself, the waiting list is 4 months however, they often have cancellations, that no-one wants to take would I want one of those at short notice? HELL YES!! Get me in! Whip the bloody thing out. I don't want it or need it. I want to be in and out and then I am one problem down only half a dozen left ha ha!
So this has left me feeling more positive. Not all doctors have their heads up their arses and no bed side manner, some are nice. He explained the possible complications gave me a leaflet and for the first time in a long time I left feeling reassured.
Don't get me wrong I am still nervous about having an operation especially since when my tonsils were taken out I woke up on the operating table.. another story for another day..
Oh and H was amazing she was quiet and used her whisper voice to chat in the waiting room she didn't whinge or cry. Until the nurses tried talking to her seems she has something against them. Bottom lip comes out starts to tremble proper baby tears and everything. My theory is she associates them with her jabs I don't know or maybe its something about the uniform. Just coincidentally that the past two nurses when they tried talking to her made her cry! Shes not a baby who makes strange with new people. She normally doesn't care as long as you feed her and cuddle her, oh and lets not forget continuous singing of row row row your boat. If you sing it about 20x you get a laugh!
Wednesday, 13 July 2011
D-Day = Disaster day.
We went to the hospital today as explained in my earlier post d-day. We were full of hope that finally we would have some answers and I could begin to get on the road to recovery.
When we first got there we were led into a room with an assessment couch. H was being as good as gold and being her flirty little self! I was asked to get on to the couch where he could then asses my mobility. With much difficulty I got out of the chair and on to the couch.
The last few days have been particularly bad to the point where even with my walking frame last night, my legs gave way and I ended up in a heap on the floor.
So he pulled and twisted, and I felt like I was being torn from limb to limb crying and telling him yes that does blinking hurt! But he would repeat it more than worse leaving me in tears and biting back from screaming. After doing his examination he got me to sit on the couch and tested my reflexes, which as I have been told before are a bit weakened.
He then when down the line of questioning saying have I lost control of my bowel or bladder. Did I have any numbness.. No... Been down this road before.
So he asks me to stand up. Bare in mind I can hardly stand and I am wobbling even holding on to my chair and the bed he then asks me to stand on tip toes. Nope not going to happen. So he tells me to sit down.
Good bloody job really. I'm sat fighting back the tears because the pain he has just put me through, I know for a fact is going to set me back by days. He then turns around and says he doesn't believe its my hip that's the problem but my back. The reason for this is because my right hip is hurting and nothing showed on the right hand side just the left.
So he says it may not be Avascular Necrosis, water on or in the bone, cant remember which apparently can be caused by a few things. So he suggests pain management and physiotherapy. Even after saying he DOESN'T think that what the MRI showed on my back should be causing this many problems as it wasn't seen to be pressing on the nerves.
I explained to him that I have gone from only having to use crutches on a bad day, to having to use a walking frame everyday. To now not being able to walk even to the toilet and having to use a wheel chair. That my legs and arms shake and spasm like mad and I cant control them when they are like that. That the back pain has worsened as well as the feeling of weakness in my legs. Could it be the disk has slipped further and is now affecting the nerves.
Oh well we use surgery on the back as a last resort. HELLO WHO MENTIONED WANTING SURGERY?! I JUST WANT ANSWERS! But his response was that even though I have deteriorated and am thoroughly depressed and struggle to manage with H and the hub cant keep taking time off work. Well I the only way to tell if the disk has slipped further is an MRI, I don't believe I can justify that. If you cant cope then you should phone social services.
Good job I'm depressed and stuck in a wheel chair because I would have bloody thumped the stupid idiot. After saying he didn't think it was avascular necrosis, he then contradicts himself. Well it very well could be the beginnings of it, it does look like it. I will order another MRI for your hips for a few months time and then come back and see me in 3 months so we can see if we think it is that!
Well it either is or it isn't. By this point I needed to get out of there. So I asked the other half for my handbag. I turned to him and said I want a second opinion from a neuro surgeon someone who deals with backs and nerves. Oh well you are entitled to that of course but don't expect to get a different answer. I doubt he will send you for another MRI but if he does that's his choice. Make your bloody mind up!!
So I left the hospital a crying snot monster. Took some painkillers and managed to sleep for 3 hours. I am awake again now and things look bleak. We had rung the GP to get them out but was told they only do visits for the elderly. Talk about ageist! What about the disabled?? I cant get to the toilet let alone down the stairs. So then the story was changed to that she isn't in today when I was told by Dr herself that the only day she had off was Friday.
I am supposed to have fasting bloods and an appointment at the docs but I know I wont make it. I have an appointment to see the gallbladder surgeon tomorrow, and I will be saving my energy for that.
I think when the doctor comes out I will have to get my anti depressants increased. I have lost the fight in me. I have got to the stage where if it wasn't for H and D I would just want to go sleep and not wake up. I don't see the point in fighting anymore. The book keeps getting passed around and I am left with no answers. No one seems to care that I have a young baby that I cant pick up because of this. That I am stuck in a bed and have to use a wheel chair.
I cant stop sobbing I really thought that today I would finally get some answers that today was the day that I would finally move forward. How very wrong. I feel like I have hit rock bottom and I cant find a way to climb back up.
The only option I see left is to either get myself admitted in to hospital to get things moving faster. Or pay for a private consultation, but what use is that if they can't get the notes or results of my MRI not sure how it works. Guess I will have to ask doc tomorrow. I know she is reluctant to allow me to continue on my pain meds, but even they only just keep it at bay so how the hell am I supposed to cope if they take them away.
Here's the list of problems:
Uncontrollable leg shaking (sometimes in both legs, mainly when standing)
Uncontrollable shaking in the arm
Feverish
Hot flushes
Blurred vision in one eye
Double vision
Tingling in arms which leads to pins and needles and eventual numbness in hands
Vibrating sensation in my spine, legs and feet
Constantly tired and fatigued
Dizziness
Nausea
Spine and Neck spasms
Never feel like my bladder is completely empty
Some days cant lift my feet up leaving me unable to walk
Weakness from thigh down
Bleeding from my bum
Stomach ache separate from gallstones
Persistent back ache, which only eases when laying down
Pain deep in buttock
Cant sit for longer than 15 minutes
Cant stand for longer than 3-4 minutes...
Cramps in front and back of legs
I don't think I have left anything out. There is no point in telling me to keep my chin up. Its easier said than done. This has got out of control. I feel like no one is listening, almost as if they think I am just a hypochondriac I'm not I would much rather be playing with my baby girl. Going for walks with her and my husband. Being able to live a normal family life. Instead I am left like this. What the hell am I supposed to do. Where am I going to find the courage to continue to fight this? Should I just give up and accept my fate that I may possibly be able to walk properly again?
Why should I do physio and pain management when they don't know what the problem is? Surely physio will make things worse just as it did last time. I know physio hurts for a while whilst doing it. But surely it isn't supposed to deteriorate your condition? That's what happened. Why should I have any faith left? If someone could please just give me an answer..
My dad has offered to kindly pay for a private consultant appointment. But if its anything like the nhs will anything get done?
When we first got there we were led into a room with an assessment couch. H was being as good as gold and being her flirty little self! I was asked to get on to the couch where he could then asses my mobility. With much difficulty I got out of the chair and on to the couch.
The last few days have been particularly bad to the point where even with my walking frame last night, my legs gave way and I ended up in a heap on the floor.
So he pulled and twisted, and I felt like I was being torn from limb to limb crying and telling him yes that does blinking hurt! But he would repeat it more than worse leaving me in tears and biting back from screaming. After doing his examination he got me to sit on the couch and tested my reflexes, which as I have been told before are a bit weakened.
He then when down the line of questioning saying have I lost control of my bowel or bladder. Did I have any numbness.. No... Been down this road before.
So he asks me to stand up. Bare in mind I can hardly stand and I am wobbling even holding on to my chair and the bed he then asks me to stand on tip toes. Nope not going to happen. So he tells me to sit down.
Good bloody job really. I'm sat fighting back the tears because the pain he has just put me through, I know for a fact is going to set me back by days. He then turns around and says he doesn't believe its my hip that's the problem but my back. The reason for this is because my right hip is hurting and nothing showed on the right hand side just the left.
So he says it may not be Avascular Necrosis, water on or in the bone, cant remember which apparently can be caused by a few things. So he suggests pain management and physiotherapy. Even after saying he DOESN'T think that what the MRI showed on my back should be causing this many problems as it wasn't seen to be pressing on the nerves.
I explained to him that I have gone from only having to use crutches on a bad day, to having to use a walking frame everyday. To now not being able to walk even to the toilet and having to use a wheel chair. That my legs and arms shake and spasm like mad and I cant control them when they are like that. That the back pain has worsened as well as the feeling of weakness in my legs. Could it be the disk has slipped further and is now affecting the nerves.
Oh well we use surgery on the back as a last resort. HELLO WHO MENTIONED WANTING SURGERY?! I JUST WANT ANSWERS! But his response was that even though I have deteriorated and am thoroughly depressed and struggle to manage with H and the hub cant keep taking time off work. Well I the only way to tell if the disk has slipped further is an MRI, I don't believe I can justify that. If you cant cope then you should phone social services.
Good job I'm depressed and stuck in a wheel chair because I would have bloody thumped the stupid idiot. After saying he didn't think it was avascular necrosis, he then contradicts himself. Well it very well could be the beginnings of it, it does look like it. I will order another MRI for your hips for a few months time and then come back and see me in 3 months so we can see if we think it is that!
Well it either is or it isn't. By this point I needed to get out of there. So I asked the other half for my handbag. I turned to him and said I want a second opinion from a neuro surgeon someone who deals with backs and nerves. Oh well you are entitled to that of course but don't expect to get a different answer. I doubt he will send you for another MRI but if he does that's his choice. Make your bloody mind up!!
So I left the hospital a crying snot monster. Took some painkillers and managed to sleep for 3 hours. I am awake again now and things look bleak. We had rung the GP to get them out but was told they only do visits for the elderly. Talk about ageist! What about the disabled?? I cant get to the toilet let alone down the stairs. So then the story was changed to that she isn't in today when I was told by Dr herself that the only day she had off was Friday.
I am supposed to have fasting bloods and an appointment at the docs but I know I wont make it. I have an appointment to see the gallbladder surgeon tomorrow, and I will be saving my energy for that.
I think when the doctor comes out I will have to get my anti depressants increased. I have lost the fight in me. I have got to the stage where if it wasn't for H and D I would just want to go sleep and not wake up. I don't see the point in fighting anymore. The book keeps getting passed around and I am left with no answers. No one seems to care that I have a young baby that I cant pick up because of this. That I am stuck in a bed and have to use a wheel chair.
I cant stop sobbing I really thought that today I would finally get some answers that today was the day that I would finally move forward. How very wrong. I feel like I have hit rock bottom and I cant find a way to climb back up.
The only option I see left is to either get myself admitted in to hospital to get things moving faster. Or pay for a private consultation, but what use is that if they can't get the notes or results of my MRI not sure how it works. Guess I will have to ask doc tomorrow. I know she is reluctant to allow me to continue on my pain meds, but even they only just keep it at bay so how the hell am I supposed to cope if they take them away.
Here's the list of problems:
Uncontrollable leg shaking (sometimes in both legs, mainly when standing)
Uncontrollable shaking in the arm
Feverish
Hot flushes
Blurred vision in one eye
Double vision
Tingling in arms which leads to pins and needles and eventual numbness in hands
Vibrating sensation in my spine, legs and feet
Constantly tired and fatigued
Dizziness
Nausea
Spine and Neck spasms
Never feel like my bladder is completely empty
Some days cant lift my feet up leaving me unable to walk
Weakness from thigh down
Bleeding from my bum
Stomach ache separate from gallstones
Persistent back ache, which only eases when laying down
Pain deep in buttock
Cant sit for longer than 15 minutes
Cant stand for longer than 3-4 minutes...
Cramps in front and back of legs
I don't think I have left anything out. There is no point in telling me to keep my chin up. Its easier said than done. This has got out of control. I feel like no one is listening, almost as if they think I am just a hypochondriac I'm not I would much rather be playing with my baby girl. Going for walks with her and my husband. Being able to live a normal family life. Instead I am left like this. What the hell am I supposed to do. Where am I going to find the courage to continue to fight this? Should I just give up and accept my fate that I may possibly be able to walk properly again?
Why should I do physio and pain management when they don't know what the problem is? Surely physio will make things worse just as it did last time. I know physio hurts for a while whilst doing it. But surely it isn't supposed to deteriorate your condition? That's what happened. Why should I have any faith left? If someone could please just give me an answer..
My dad has offered to kindly pay for a private consultant appointment. But if its anything like the nhs will anything get done?
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