I am sorry for my lack of a blog yesterday but I was in such a crappy mood that I didn't really know how to put my feelings down without you thinking you should send out the men with the white coats to take me away.
Today I will confess that I'm not much better in fact, I am very close to the edge (emotionally) and if one more person tells me to be positive I will shove my foot POSITIVELY up their arse! It's my (ms) party and I'll cry if I want to.
I am not seeing my Neurologist until April because that is the "next available appointment" but yet my Lumbar Puncture was done on February 14th. Why should I have to wait two months to get any answers?
It is easy for the Doctor to think this is acceptable because he doesn't have body parts going numb, heavy or tingly. He isn't sitting there with the room spinning or things floating in his eyes. Oh but wait, didn't he say how he isn't worried about my symptoms although he understands how they are bothersome to me, yes bothersome!! How about the fact that for the last two days I have felt so fatigued, tingly, light-headed and achy that I have sat here feeling like screaming and shed way too many tears yet again? Yeah, really fu*king bothersome!
Sometimes I think that some of these Doctors forget that there is a real live person with actual feelings that sit opposite them, not just a list of symptoms and test results. Speaking of test results, what happens if they come back negative? I am basically screwed aren't I? I have read so many different views on the tests too.
I have people asking me when I will get my Lumbar Puncture (Spinal Tap) results because then I will know for sure and yet I read others who say that their Neurologist doesn't even do these tests because they are painful (bloody right) and they are often wrong.
Does ANYONE really know?
I called my GP today to find out if they get copies of the results because I don't want to wait. She said they don't and that they have to wait for the consultant to write to them. I asked if there was somewhere I can call but apparently there isn't. She reassured me that "no news is good news", I couldn't be bothered to argue that point.
Sorry, I realise this is a rant but that is how I am feeling and I have committed to being honest in this blog. I won't sugar coat it, this sucks and feeling like I have nowhere to turn for answers or help sucks even more. I can honestly say I have never felt so lost or alone in my life and I don't know what to do about it.
It is so weird because I have had people tell me that they read my blog and I am an inspiration to them - I don't feel like an inspiration. I feel like a sad, pathetic loser. I am not earning enough money and I need to be putting myself out there, drumming up new business and gaining new clients. Problem is that my "get up and go" got up and went and so I spend most days worrying about my business but not having the energy to do anything about it.
Phil and I had our usual date night on Wednesday and when he was done telling me about his day at work he asked "how was your day?" I felt like I had nothing to say, nothing to offer other than "The sofa was comfy and The Jeremy Kyle Show was great". Seriously?? Is this who I am now? I felt instantly insecure (and I don't need any more help in that department).
I am lucky if I am dressed before Noon, oh who am I kidding, before the 3pm school run and it is an effort to put make-up on or to dry my hair. I haven't called family members who are important to me because I know I will cry or be totally depressing to talk to and who needs that? I know they will be mad at me for not calling and so I put it off even more because I can't handle the stress of it.
I was supposed to be going swimming this afternoon with Phil. It would have been the first bit of exercise in months and maybe I would feel better for it but I am just so fatigued and dizzy that I can't face it. I was in bed early last night and slept for a solid 8.5 hours (at least) and yet today I feel like I haven't slept in weeks, I am frustrated and sad.
I know that beating this thing (whatever it is) is all about having a PMA (positive mental attitude) and the mindset of "this wont ge the better of me" but at the moment I am stuck in a bit of a rut and I honestly don't know how to get out of it. I used to think I was a strong person but even the strongest of people have their breaking point don't they?
So enough about me, how are YOU?
Rant away. That's what the blog is for. It's your safe place to do that. And spinal taps can be horrific. It so happens that's what my daily poem was about today. I've had two LP; one, inconclusive; the other, indicative of MS. The only importance is for determining whether you have MS, but there are other markers also indicative of MS, like brain scans and clinical history, which are also useful. I don't know if you are on disease modifying drugs yet, but whether to go on those or not may be why they have ordered one for you. I don't know if you were told not to move your head for a while after your LP, but not moving it made a huge difference for me. I did not get that blasted headache the second time around.
ReplyDeletehy ,you may have forgot but your blogs always start with "i will always be honest "so dont apologise for telling it as it is ,theres nothing wrong with admiting your on a downer .weve all had bad times just be yourself .if you feel like a good cry have one !it is better than trying to bottle it all up and no one will think any the less of you for being human .we know youre tuff and positive and going through hard times but your surrounded by friends who wish you nothing but sucsess in you r battle with the 'beast'xxx p.s some of then can actualey spell )
ReplyDeleteNO NEWS ISNT ALWAYS GOOD NEWS...after my MRI, I didnt hear anything....then when i had follow up appt with neuro, he said 8-10 spots..so ordered LP. After that was done..I didnt hear anything...then the results were *suggestive of MS*.. I called the office a few times, but their answer was " you will have to wait for someone to *interpret* them, and send the results to the neuro..then come see him for the answers"... I also had heart tests done, and never did hear about the results from them!! waiting sucks. Hope things speed up for you, I know it is hard to keep dragging on and not knowing... try to have a good weekend...
ReplyDeleteKaren,
ReplyDeleteIt all sucks.It is horrible to have put you through so much when you had that awful spinal tap that left you in awful pain and little relief for far too long..Now on top of that to continue the wait.. That appointment should have been aligned to follow after the LP with a reasonable time given for the Radiologist to write a report..I know had it been the doctors relative it would all be done stat.. One idea I have used before is calling and asking to put on the cancellation list to be called to offer me a spot when another patient cancels or the opening is vacant for another reasoneg; urgent status.Over the years I seem to observe that I may get a shift almost,nothing I can prove,in treatment when a close friend,my husband or grown daughter has been with me to give support and often ask questions along with me..It dis require time off so I realize that is not always possible. You would not be human if at times it wasn't all too much for you... Let the faucet pour out when it will...You are strong and dynamic the other times when you need to be..<3
The whole thing just sucks..it really makes me so sad to feel your pain through your words. I feel helpless...wish there was something I could do. I wish I could share this with you...one day for you..one day for me...like everything else we have shared as sisters. I love you sis....I pray that one day you wake up and this is all gone. I love you xxxx
ReplyDeleteHi there... I read your blog everyday and although i haven't been diagnosed with anything, my symptoms are exactly the same as your but i have 'anxiety' and that is that - no tests needed.... :(
ReplyDeleteKaren, I came across your blog via my lovely friend Jenny. I can't even begin to understand how you guys feel, but I have to say that your words move me. When I last saw Jen I just wanted to put my arms around her and make everything the way it used to be for her, and I'm sure that all your friends and family feel exactly the same way about you too. Understanding just how much others love and cherish you will hopefully give you the feeling that you have a future, that things will get better because you will make them better, and that through this you will gain the strength to face everything this world throws at you square in the face and not let it beat you. You can do that I am sure. Your words tell me that that is what you want to do and that you will do this.
ReplyDeletePlease make the effort even though it sometimes seems easier not to - not for anyone other than yourself.
With all my deepest best wishes now and for the future - because you do still have a future.
Rob Chisholm
XX
WOW!! I woke up the morning of Feb 5th,2012 and it felt like someone had slammed there fist into my eye the pain was horrendous and it felt like I had film over my eye. I also had numbness and tingling in my leg which I thought was just a pinched nerve. I went to the eye doctor on Feb 7th had MRI on Feb 24th they read MRI that day and said I had MS. I went to neuro just yesterday he confirmed the DX and I have to have another MRI on my C spine next Tuesday and he will read the results right there. This has happened all in a month, it has been fast, Im confused, in pain but at least I know........and why the LP, Oh my that must hurt. I feel very blessed that I have had Wonderful Results with the doctors I have seen. If I was you I would be Sooo Pissed, you need to be able to RANT AND RAVE as much as you want. This is the first of your Blogs that I have read but I will be back.
ReplyDeleteDiana
Hi Karen,
ReplyDeleteI totally understand your frustration as I was in the same position as you around this time last year. I had a totally dispassionate neurologist who really didn't give a monkeys, stuck in a system where it takes an eternity to achieve anything. I had my second relapse in February 2011. It took four months to get a hospital appointment, a further MRI, an LP and then the diagnosis (in June). From seeing the consultant following the result of the MRI to getting the result of the LP took 10 weeks! It was a really difficult time, because I'd gotten to the stage where I honestly thought I was imagining it all. Unfortunately the system is slow and it takes no account of the effect that delay has upon people's lives. I still find it very hard to express how I feel about it all so I end not to. Its just important to remember that your friends and family are there to support you and help you through it.
All the best,
Abbie
Maybe you should go to the emergency room tell them you are feeling worse maybe they will call the neuro oncall for an evaluation maybe then you will get answers because they will have to look at your chart to see you in the ER and when they do they will prob tell you yes or no and this is what the problem is and this is what will help you. Hope that helps sorry you are still waiting April is such a long wait but then again if it is MS there is no freakin cure so there will be nothing given to you but some pamplets to take home read and decide which shot is best for you and they will offer oral medications to take for each symptom you are having bam thats it blah. Sorry but it's an MSers reality NO ANSWERS. Rant all you want get it out , feel better soon.
ReplyDeletei've found that in the same way frustration has a negative impact on my symptoms, anger and fight have the same affect. i do all to remove these from my everyday life in very small, simple ways at all points thoughout the day. for me this is mainly to control fatigue, which in turn has a negative effect on my physical symptoms. i, as a conseqence, i don't fight the m.s., but i certainly do manage it! i am incredably positive, but at the same time accept the condition, this isn't contradictory. it is nobody's fault and it can't be cured, so let's make the best of what i can and want do. sort out the big picture, what's important to you, what make's you tick, other things can be set to one side. when the road gets rocky though the journey you then still have your eyes on the horizon, knowing the bumpy patch won't last forever and there is a good life ahead makes the low time a lot more bearable. i hope this gives a little insight into my mind set and may be a little for you to think about yourself.
ReplyDeleteYour blogs are great, so very real! That's probably why you're seen as an inspiration too.
ReplyDeleteI can only hope that you feel better soon. At this stage I think my work keeps me going, even if it's high stress.
Please excuse the late comment, I must still catch up on the later ones :-)