I got a Facebook message from somebody asking if I was ok as I hadn't blogged for quite a while. Well, here I am my friends, still smiling - just!
I have had my lovely Sister, my wonderful Mum, my Nephew and Niece over for a couple of weeks from Florida. It feels like just yesterday that I was jumping up and down with excitiment as their taxi pulled up outside and this morning I waved them goodbye as I stood in floods of tears by the front door. I HATE living so far away from my family.
The first weekend they were here we travelled North to Liverpool for a family wedding. It was a lovely day and we drank and danced the night away. This is me with my Sister & Mum.
We had a journey from hell back down south the next day but then one could argue that we were complete morons for taking a train on a Sunday AND on the day of the Jubilee. It was pouring rain, none of us had coats, we got sent from coaches to trains as everything was disrupted and then just when we arrived back in Ashford and thought the nightmare was over, we realised we had left the backpack on the train with the CAR KEYS in it.
Nightmare! We got home in taxis and thankfully the bag was found and we were able to collect it the following day. We are able to laugh about it now but at the time we were all tired, cold and it nearly sent us all over the edge.
I have been dealing with a LOT of personal stress lately and I think that is why I am really struggling the last few days. I can really feel a difference in my legs lately and it freaks me out a little bit to be honest. I want to stay positive but the days of pain seem to be getting more and more. My legs ache to the bone, like growing pains but MUCH worse and they feel heavy. It is such an effort to stand up or to walk. I feel like such a drag, like a moany old cow bag and I dont like to feel like that. It isn't who I am!
Last week the wedding was amazing and I felt GREAT. I danced, I laughed and I didn't feel one ounce of how I feel now. Part of me thinks that I need to just be grateful for those great times and I AM but I am resentful and frustrated that it would seem that I then have to "pay up" for the good times. I don't want to always be in debt to my body but really, that is how I feel. A couple of days of fun = a couple of weeks of pain and exhaustion.
You see this is why I haven't been blogging. I don't want to be constantly complaining as I know I need to stay positive and enjoy the good days, roll with the bad ones etc. I KNOW this, I am not stupid and I AM grateful but lately I have felt so low whenever I think that this might be it, how it is going to be ... forever. How bloody bleak!
I also know that there are people out there a lot more flipping worse off than me so then I feel guilty for even moaning. It's all a bit crap and I feel like I am stuck on a hamster wheel of self pity and maybe even a touch of depression. Yuck! How do I get off?
People have been asking where I am at with the tests, results, appointments and such. I have had my CT scan of my chest and abdominals (with contrast), which was easy peasy compared to other tests. I have had more MRIs (with contrast also) of my brain, neck and spine. I have my next appointment with my cardiologist in August, a mere SIX months after returning the heart monitor that I was required to wear for a week (back in Feb). I guess I have to just assume (or hope?) that these ongoing chest pains aren't going to kill me in the meantime.
I don't even have a follow-up appointment for my Neuro yet but to be honest I am past the point of caring now. I have an appointment to see a Urologist in early July to see about this duff little kidney of mine but again, I am sort of apathetic about it all now. I have lost interest in the NHS and Doctors because to be honest I feel like they have no interest in me or my symptoms. I have reached my "bollocks to you all" point I think. It isn't like an official label of what is wrong with me is going to change my life or my symptoms. Does it really matter?
Nightmare! We got home in taxis and thankfully the bag was found and we were able to collect it the following day. We are able to laugh about it now but at the time we were all tired, cold and it nearly sent us all over the edge.
I have been dealing with a LOT of personal stress lately and I think that is why I am really struggling the last few days. I can really feel a difference in my legs lately and it freaks me out a little bit to be honest. I want to stay positive but the days of pain seem to be getting more and more. My legs ache to the bone, like growing pains but MUCH worse and they feel heavy. It is such an effort to stand up or to walk. I feel like such a drag, like a moany old cow bag and I dont like to feel like that. It isn't who I am!
Last week the wedding was amazing and I felt GREAT. I danced, I laughed and I didn't feel one ounce of how I feel now. Part of me thinks that I need to just be grateful for those great times and I AM but I am resentful and frustrated that it would seem that I then have to "pay up" for the good times. I don't want to always be in debt to my body but really, that is how I feel. A couple of days of fun = a couple of weeks of pain and exhaustion.
You see this is why I haven't been blogging. I don't want to be constantly complaining as I know I need to stay positive and enjoy the good days, roll with the bad ones etc. I KNOW this, I am not stupid and I AM grateful but lately I have felt so low whenever I think that this might be it, how it is going to be ... forever. How bloody bleak!
I also know that there are people out there a lot more flipping worse off than me so then I feel guilty for even moaning. It's all a bit crap and I feel like I am stuck on a hamster wheel of self pity and maybe even a touch of depression. Yuck! How do I get off?
People have been asking where I am at with the tests, results, appointments and such. I have had my CT scan of my chest and abdominals (with contrast), which was easy peasy compared to other tests. I have had more MRIs (with contrast also) of my brain, neck and spine. I have my next appointment with my cardiologist in August, a mere SIX months after returning the heart monitor that I was required to wear for a week (back in Feb). I guess I have to just assume (or hope?) that these ongoing chest pains aren't going to kill me in the meantime.
I don't even have a follow-up appointment for my Neuro yet but to be honest I am past the point of caring now. I have an appointment to see a Urologist in early July to see about this duff little kidney of mine but again, I am sort of apathetic about it all now. I have lost interest in the NHS and Doctors because to be honest I feel like they have no interest in me or my symptoms. I have reached my "bollocks to you all" point I think. It isn't like an official label of what is wrong with me is going to change my life or my symptoms. Does it really matter?
So enough about me, how are YOU?
Hiya, I read your story with interest, should you moan about it ? well we’re all different I guess, I just choose to ignore it, I was diagnosed with relapsing remitting MS 16 years ago and for last 10 with secondary progressive. I was an HR Manager until 5 years ago now I’m a part time carer for 2 brothers who have muscular dystrophy, a cleaner and a washer upperer in a restaurant, how times change! I walk like I’ve been on the gin all day even with the assistance of calliper like devices on my legs but sometimes I do go in my little disabled shopping scooter. As for the pain I suppose I’m lucky but sometimes I squeal like a little piggy in the night because of chronic leg cramps but hey as my husband of 35 years says “at least you’ve still got your health!” For the main part though I don’t get that much pain however I do moan about it quite a lot when I do! I inject every other day with ‘beta feron’ it seems to help with me as before I started using it fatigue got to be a real issue, I fell asleep at my office desk many times but now its just the evenings as I drop off watching the TV, I rarely see the conclusion of an episode of CSI…
ReplyDeleteJules xx