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How much longer.........

Nov 22, 2009 - 12 comments

I was laying awake last night in so much pain thinking to myself how much longer can I cope with this cr*p its wearing me out now.

I had a phone call from my GP on Friday she got a letter from my neurologist who has told her he wants me to see a rheumatologist and to arrange it ASAP. The last person she wrote to declined as she said all my symptoms are neurological and although my neuro knows a lot are he thinks and has always thought that there is more than one thing going on.

So back on the trail. My GP is going to arrange for me to see a different rheumatologist in the city rather than local. I dont care as long as I get somewhere.

All I want is some peace no pain is that too much to ask really. They offer me medication to help the nerve pain but cant tell me why I am in pain enough to have this medication its ludicrous LOL.

They gave me gabapentin which is horrible and made me feel spaced out, and Amytriptline for the night and when I took it I could hardly get up in the morning.

Why is it soooooooooo hard to find out what is wrong with me.

I have so many things show up.

I just dont know if I have the strength any more to fight this. I sound really self absorbed here but I am not 3 years is a long time to be in pain and have no idea why.

When I was laying there last night trying to get back to sleep I felt like running away as if that would make any difference but sometimes I wonder if it is my life that is causing it. Perhaps if I go somewhere else i will feel better.

I almost feel tempted at times to try it but then reality sets in and I have a good day and all is well with the world again.

I think if I could work out when I am going to have a good or bad day it might help, but everyday is different.

I can have the worse night ever but have a great day, I can sleep like a log without waking up and have the worse day ever its all so confusing.

Oh well tomorrow is another day. Perhaps I will not be so self pitying when I get up tomorrow who knows.

It almost feels like ground hog day. ..............................x

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483733 tn?1326798446
by TrudieC, Nov 22, 2009
Hi there.  I can very much relate to your post here.  Many a time I have wanted to run away from my pain and life, even tried when I was in childbirth.  I hope that today is a better day for you.

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by rudyhorse, Nov 22, 2009
If we do decide to run away we can all go together. LOL :)  It must be so hard to endure day after day, I know what you mean, the pain meds just leave you with different issues.  I have been cutting down on the Gabapentin and hate tri-cylcic anti depressents...!!  

Mrs A you are such an encouragement to us all.  That isn't always helpful but I don't know where we would be without you.
Don't you wish Dr could do more or they could figure out what is going on, especially with all of us having similar symptoms.


Avatar universal
by illinwithoutacause, Nov 22, 2009
i am so sorry you are feeling this way, but like so many of us on this board, i can completely relate.  it seems so unbelievable that modern medicine cannot help those of us who are the square pegs who do not fit into the round holes.

i send my prayers and thoughts of healing across the miles to you, and to everyone else here.  like tracy says above, you have helped us all so much.  i know it is so difficult, but keep the faith.


1052851 tn?1307741160
by doctora, Nov 22, 2009
I second all of the above postings. Try not to let it get you down, even though it is always there.

I have been in pain over 3yrs now (since my last Grand Mal siezure), and broke 4 vertibrae. The hospital didnt even take an xray when I got there, even though my husband told them to check my back, then they sent me home. This was over the Christmas-New Year holiday, so my GP arranged for an xray, and the could see 3 severe breaks, then they sent me for an MRI and found another. No one knew why I had the seizure. I saw 2 neurologists and a few other specialists (osteoporosis, oncologist), and no one saw anything. In there books that was the end. But now I have to live with constant pain because my bones didnt heal straight, have to take medication, not sitting or standing too long, being really careful when walking on ice etc., and I still dont know what caused it and I dont know if it will happen again.

There are a lot of us out here who can relate to what you are going through. All you can do is take it in stride, and every day try to make it a bit better.

Hoping you feel better very soon.

Avatar universal
by daydreamer101, Nov 22, 2009
We're all here for you. I too, just passed my 3rd anniversary of fatigue and pain.

The doctors who dont understand us "square pegs who do not fit into the round holes" (great saying binx67!), the medications that help very little, and everything else going on can make you frusterated ("frusterated" being the understatement of the year). But be thankful your alive. At one point or another we all think it would be best if we just curled up and died, but look deep into your soul and you'll see that is NOT TRUE. god created you, and knew what you would be going through. He has a great, fantastic plan for you. you just have to have faith.

I too, i have a story about my health. But sometimes its best to be thankful we are not dying of cancer, and leave our health concerns behind. focusing on what is wrong with us never helps us see what we are thankful for. Since thanksgiving is right around the corner, take a few days to go on a "thankful safari". look anywhere, and you'll see people who have it worse than us.

Hang in there and god bless!!
~ teenage fellow sufferer :)

551343 tn?1506830518
by MrsAristotle, Nov 23, 2009
Thanks guys for putting my life back into perspective. I still feel wobbly to be honest but I am trying to get back on track.

Its just the pain at the minute its really wearing me out but hopefully in a few days it will get better I can only hope.

I can thank you all enough for taking the time out of your own busy lives to support me. Thank you. xxxx Mariaxxx

Avatar universal
by Katie116, Nov 24, 2009
Old Texas saying, "No matter where you go, there you are."

But if we all run away together, it would at least be fun.

415109 tn?1304890182
by mser, Aug 28, 2011
Hello Mrs Aristotle: I am so sorry you sent me a message so long ago and I am just now getting to read all my inbox mail. I have been so busy and when I finally stop at night I crash. I empathize with you so is so hard not knowing what is wrong and just being given drugs to treat sx that make you feel worse. I too am on gamapentin but only take 100mg at night since I am so sensitive to drugs. I have been on Copazone now for almost 4 years and it is destroying the fat tissue in my things and hips. I don't have a lot to loose so its a good thing I am not a leg or butt model as my NP said lol. I have been hit with a shocking new diagnosis since April of this yr. I have thryoid cancer and next week go see the ENT surgeon to see how much surgery I will get to have and what kind of other tx follows. I was shocked when my biopsy came back positive as I kept being told oh its 95% benign type of cancer. Yeah I had to be the 5%! Just another wrench in the toolbox of life. I have found it so difficult to get thru these two weeks since I found out...the waiting to get it removed has made it very difficult to sleep let alone concentrate. Thank God my hubby and I are working on an addition to our home. We decided to put in a therapy pool so I can swim and do water exercises which help me sleep and help my pain as well as keep me healthy but we needed to save $$ so we are doing the finish work ourselves. We are on the very home stretch. We decided if we get any more of these grand ideas just shoot us now! I do hope you can find the answers to your questions and remember we are all in this medical fiasco together. I think if we all run off it should be to Bora Bora or some great tropical island. Our pool water reminds us of the 84 deg. water of Tahiti. perfect for swim and perfect for getting cool when you get overheated!! Good luck and ❤

551343 tn?1506830518
by MrsAristotle, Dec 01, 2011
Well its the 1st December and I am still in the same situation. Nothing has changed in 2 years although my disability has worsen my resolve to stay alive and upright at the moment is good. I dont know what happened where I turned the corner in my depression but I think it was just taking myself away from everything Internet. I have had a break now for over 4 months and have been doing some research for myself and my own form of cognitive behavioral therapy.

Well a few things have happened my personal life is much the same hubby is supposed to be retired lol but still works phew thank god for that as I dont know if I could actually put up with him around me all day.

BUT we have been doing a lot more things together. We have made 10 gallons of red wine from our home grown grapes, and some 4 gallons of beetroot wine as my daughters friend had been growing them and didnt know what to do with them all lol. OMG I was purple for days lol. However, beetroot wine is so recyclable friendly because you can use the beetroot juice for the wine, and chop up the pulp for beetroot in vinegar, so I have 5 big jars of that too. We also did loads of pear and apple chutney and green tomato chutney from all the fruit in our garden. It was very very tiring but I made hubby do all the chopping of onions lol so got through that chore unscathed. And I have to say even to myself the chutney is delicious.

Well the wine is nearly ready to bottle now we think we will get about 80, so i have designed a label for us how posh is that. We have had to scrabble about for bottles and put out a call to all our alcoholic friends lol....

So we have loads of wine now for xmas woop woop (not that I drink anyway lol but the effort has been exhilarating and the end result just makes you feel all buzzy inside). Every time I go through my kitchen I can hear the plop plop or the fizzing of wine going through its fermenting stages......Yes I know how sad am I.

My eldest daughter is finally in a good place with her new partner Kris, who is a transgender, female to male. He is now officially male (which is totally confusing as my daughter is gay, but you cant help who you fall in love with). Although he was signed off sick he is now well enough to work and has just started a job in a care home for dementia/alzhemiers so i know where i am going eventually lol. He is a great guy, and they both seem to get on really well. My eldest daughter is doing really well now with her M.E. it just goes to show that what i have said all along is some of these diseases are stress driven....remove the stress and the illness heals some of itself. Its really great as we are now getting on so well together and I love her to bits.

My grandson is now in university. Wow I keep having to pinch myself because only 2 years ago he was threatening to kill himself, was cutting himself because of being bullied at school, and now he is in university how proud a nan am I. He came through it all with lots of love from his family. He is studying to work in the gaming market and is going for a masters.....

The downside is my younger daughter who has sunk deep into depression.....and is worrying the hell out of me. Basically, she has suffered a cut nerve in her stomach after her hysterectomy and the pain has been intense and has not lessened with steriods, so she is on long term lyrica. I keep saying its the Lyrica that is causing the depression but no one listens to me. We have her in a close family support group right now, and slowly she is coming out of it. The worse part was her boyfriend of two years breaking up with her because he cant cope with her kids who both have ADHD (THATS partly why she is depressed and also because of the kids). Her house went into a deep slide so our friend who should have been an Army Major as she will have NO NONSENSE lol, has gone through her house decorating lol...and sorting her out.

I have now paid for her to attend acupuncture for her anxiety and the pain. She did have to see the neurologist because they found she is left sided weak, and her left eye is dull.

She has had MRI, and tried unsuccessfully twice to have a VEP test, but both times she had psuedo fits and they couldnt continue, so the tests are inconclusive...although the MRIs were clear which is something. We are trying to find out what they are going to do next, as they cant really say she has no neuro problems, because one of the tests has not been able to be done. They tried to say she was putting the fits on (eyes rolling in the back of her head, eyes twitching and her going into space) she said why would she. They came to this conclusion because her ECG is clear of epilepsi....well something must have caused it.

Anyway my daughter at the moment is ongoing and taking it out of me quite a bit, BUT in a perverse way her problems have been helping me cope with my own if that makes sense.

Another reason I think that I shifted out of depression is my best friends mum who I have known for about 30 years has been diagnosed with inflammatory cancer of the breast. She is my age and has a long fight ahead of her. It made me sort of sit up and think what the hell have I really got to complain about and thought myself to be quite lucky really as although god is testing me with many things so far he hasnt thrown that at me....yet.

Now oh yes i did a bit of research and found the Best Bet diet or something similar for people with MS. It is gluten and dairy free.

Well I thought what the heck, why not try it, in for a penny in for a pound as the saying goes.

I have been on it now for about 6 weeks. Has it done anything? Well sort of. I have lost 5lb in weight and my fatigue levels seem to have improved and the awful stomachache i used to get when eating bread and pasta has gone completely, i dont get bloated now and have little gas (which is a blessing lol). Has it improved my pain, no I dont think so, but perhaps i do get less burning which is good. I used Soya milk now instead of dairy. Gluten free food though like bread is horrible but if it is toasted it is sort of palatable............if anyone has a good recipe for gluten free bread can i have it please lol.

I wonder why i lost weight does anyone know why i would? I found lots of cakes i can eat lol so i have actually allowed myself more treats not less. One thing i have noticed is around my feet and ankles used to be pockets of fluid and even these seem to have diminished....coincidence or what?

Now the next part of research is lots of vitamin D which i was lacking last winter.....and exercise to keep me mobile.

What to do what to do...i wanted something to get my outside but gardening although i can do basic things with the winter setting in the garden is now low maintenance (although tell that to the leaves lol).........

I was watching a gardening programme on the telly a few months back and they were talking about back yard chickens and how to look after them....oh I thought i could do that and get some fresh eggs too........and table scraps.

My hubby thought it was a good idea and we bought a house, and he made a large run. I did lots of reading on how to keep chooks and set up a home for them.

Now the day came to actually go and buy some lol. I was rather nervous as what if I couldn't cope with them, was I making a mistake......

Well we found 4 girls of different breeds all hybrids. A red hampshire(Matilda), Buff Orpington (Maddonna), Burford Brown(crazy legs), and a Maran(funkychook because she has a large red crown which has flopped over lol).

They were at point of lay at 16 weeks and were brought up together so i couldn't separate them now could i? Humm did I bring them home? Well you will have to wait and see because I am tired now but will post again............

Big hugs to you

551343 tn?1506830518
by MrsAristotle, Dec 02, 2011
Well hi again we must stop meeting like this lol....

Humm i realised when i had finished typing that i called my chooks by their names so it doesnt take much to realise that they did come home with me lol.

Whilst i am typing this, my favorite red(matilda), is laying outside against the patio door, beseeching me to let her in onto my new green carpet, I expect she thinks it is a field of grass lol.

How mad was I getting these 4 birds.....I totally lost the plot lol. Just getting up in the morning is hard enough, but having to get up and see to 4 more animals who rely on me well its just stupid so I think i have finally lost the plot and there is actually no hope for my sanity.

Chickens OMG how can we eat them, they are the funniest things on this planet. Each one has their identity just like us humans.

Red(matilda) is the boss just like me, and she squawks the loudest too, and woe betide anyone who gets in her way when food is being thrown at them.....

She actually thinks I am her cockerel I am convinced of it. When i let them out of their house in the morning she wants me to stroke her back......she actually bobs down for me to do it. I feel like some sort of cockerel pimp the Maran is doing the same.

IF i go into the garden and let them out they both follow me...sending me silent messages please please please turn over some rocks so we can feast on the bugs

They love sausages........

The funniest thing was a few weeks back when Lucy my jack russell hid one of her sausages in the garden to eat later.

Matilda dug it up and I was stood there watching a mad rugby scrum of chickens...3 chasing one, trying to get the prize off chance ... head down crown flowing in the wind and her wattles flapping around her beak she tucked down and ran for it was the funniest thing i have ever seen. She outrun all three and placed herself away from attack and ate the whole darn sausage for herself. What a pun intended.

I think to myself whatever I do I must never fall over in front of them I can imagine being found picked clean lol whilst 4 fat chickens preen themselves tee hee.....I know I am weird but what can I say lol it is the truth.

Chickens are fun and in the 2 months i have had them, they have given me lots of enjoyment and fresh eggs.

My goodness a fresh free range egg from well fed and clean birds is just the best thing in this world. The yolk looks like sunshine and just tastes so eggy lol.

Keeping me on my feet has been good for my legs I am determined to stay out of a wheelchair in the house for as long as I can.

Well i started a new diet and will tell you all about it, but not now as I am tired again........

Big hugsxxxx

Avatar universal
by JackieCalifornia, Feb 29, 2012
Hi, long time, no talk --

Sorry you have been suffering still ... I just did a quick online search for:

uk lyme disease

and there were some very interesting links.

Here in the US, neurologists, infectious disease MDs and rheumatologists are too often the most blinkered and least aware of Lyme, and it sounds like you may be running into the same thing.

I don't know whether National Health would cover the cost of seeing a Lyme specialist, but do consider it!   Take care -- best wishes --

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by margypops, Feb 29, 2012
I just spotted your wonderful, interesting journals, I love the Cotswolds one of Englands beautiful places ..I was envisioning the chicknes and the jack Russel my mom used to have two of them , feisty little dogs .I thought I had Lyme I was bitten in Cornwall about 2o years ago just before I came here to the US, all tests have been negative.. I hope you get some relief soon now going to reread about the chucks and the sausages

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