Where am I now?

[Gra661]

It seems such a long time since I’ve blogged or posted a comment on the forum, but since I’m sitting with my feet up (and I shouldn’t be) I thought I might spend a couple of minutes and put up a blog and briefly let people know how things are.

As I race towards yet another birthday it has caused me to reflect a little on the last couple of years since viral meningitis. Many things have changed, some of things I am happy with some I am not.

Like everyone else on this forum I have fought with and suffered the after effects of the illness I know I need not highlight what they are as we all know them far too well and have gone through them to some varying degree. As one who left hospital with zero information on viral meningitis you are totally unprepared.

For me I suppose like everyone else it has been a struggle to live basically with the new you. This new character you have become is an unknown person and takes a little time for you and everyone else to get used to.

The things I am happy with are that I‘ve been able to return to work full time, which was a great relief and what I really appreciate is that my family and close friends have stood by me and helped me through a lot of the problems. They have been so loyal and supportive through the real difficult times they have been and still are priceless.

The things I don’t particularly like and may seem trivial to some is the lack of dexterity that I suffer from it is extremely frustrating at times. I still do suffer from headaches but nothing like before, but they are a constant reminder of the illness. Most of the time they are more of tightness around the head but can be constant. I do still suffer a little with mood swings and depression and can be terrible to deal with at times, but nothing in comparison with what I have suffered in the past.

All things said I am so much better than a year ago when basically I was just going through the motions of life and being thoroughly depressed. I didn’t think that recovery would take so long and I am not out of the woods yet, but I am learning to take some of my own advice and that is to be patient.

[Tiga]

glad you are feeling better, after VM, recovery is a journey, and each path is different for each person, sometimes the path becomes small and dark, other times, you turn the corner of the path and the sun is high and shinning, then you turn and cornet on the path, and the its cold and windy, BUT one thing we all have in common is, that will still walk the path, never knowing whats around the corner, and that's because we are the lucky ones that survived, the path may be long, but just taking those steps each day means we are getting better, we will over come, even its a mile or 10000 miles, every mile we walk, is a mile behind us. so good luck on your path of life, sometimes you may want to walk, other times you may want to run. BUT know this, you are still moving, and never look back, just keep going and find that sun that will shine on you. Best of luck hon and well done for keep going

[Gra661 in reply to Tiga]

Hi Tiga

First of all thank you. The path you speak of as I'm sure most people will agree with tends to be a meandering one but always going forward. It may take some time but I know I will get there, so close at times to that sunshine you speak of, but like the weather always changeable. There are always good and not so good days but thats life in general. We are as you say survivers and the key I suppose is to be positive in your outlook and that is something we all must have. That is something I now think I have and will use it to straighten that path.

[Tiga in reply to Gra661]

LOL sometimes my path, is in a circle, today i tried to explain i need a peg for my washing line, OMG could picture it my head, in the end i played a game of charades to the shop keeper i think he thought i was off my head, no just walked in to a brick wall while on my walk on my path. Gra661 you will get there, and sometimes like me today you will loss the plot, hell i mean how hard it is to say i want pegs, had a brain fart, as my family call it. you say key I suppose is to be positive in your outlook - in my case a mad sense of humor, hell if you cannot laugh after VM, what can you laugh at, Good luck on your bendy mad path, and may the sunshine come faster each day, cor hear me sound like buddha haaaaaaaaaaaaaaaaa

[legless7397]

I suffered from bacterial meningitis back in 2006 and as a result had to have both legs amputated below the knee along, with a whole host of other problems, I have regained my mobility and have been back at work full time for about 18 months, I have been in some very dark places during my recovery and have had to seek appropriate help, I take each day as it comes and try to be as positive as I can, outwardly you would not see my disability and that is what I have strivesd for, to get back to normal as much as I can, I have always been of the opinion that there is nothing I cannot do, I just need to find the way to do it.I am 7 years down the line and even now I am not fully recovered but as the previous post stated we are the lucky one we survived this terrible affliction and are here to prove that you can come back from this. Stay strong and enjoy each day as much as you can.

[Gra661 in reply to legless7397]

Hi

I too have seen those dark places you speak but have always had something happen to bring me around and do not wish to return there. As I mentioned the problems I suffer from may seem trivial and for what you have gone through you have my greatest admiration for your achievements. The key that you have mentioned is to be positive and that is something I now have.and intend to make the greatest use of. Like I have said to Tiga life is a challenge itself, surviving and coping with meningitis is a difficult test and hopefully we will all pass the exam. I wish you the very best and thank you for your comments and may you too continue to improve.

[ignoreit in reply to legless7397]

Very interesting 'legless7397'. I too had BM...with complications of DIC. While in ICU, my extremely painful legs turned coal black, especially my toes. The doctor would come into my room and debride the black tissue without any anesthesia whatsoever...while I bit down on a towel. I would shake for 24 hours after each debridement.

After 10 years of being released from the hospital, I still couldn't tolerate the pain of shoes.

I have since found ONE PAIR that I can tolerate. It's now been 35 years...and the pain has continued to dissipate each year. My feet are still painful...but not excruciatingly so now.

Do you have extreme pain at your places of amputation? Not phantom limb pain...pain from nerve endings? If so, I can assure you that that pain WILL decrease to a tolerable level. Are you able to use prostesises or is your pain too great?

[legless7397 in reply to ignoreit]

I still get what I call electrical pain which feels like someone touching part of my foot with a bare live electric cable, and they can be bad but do not last for long. I lost the legs on 6th April 2006, was cast for prosthetics on the 14th May 2006 and was walking without any aids by September the same year and have never looked back. I have had problems with 1 stump over the years and have have 3 lots of surgery to correct problems, but touch wood I have had no issues for 2 years now. outwardly if you saw me walking down the street you would not know I was on prosthetic limbs except when I wear short as it is then blatantly obvious.

[ignoreit in reply to legless7397]

Yes, I know those sudden shooting "electrical pains" but they last only a few seconds with me. For me, the problem is the 'other' constant pain of my feet. It feels as if there are wire bands around my "toes...er...what's left of them" and someone is pulling the wire tighter & tighter. The longer I stand, the tighter the wire is pulled. This pain intensity has GRADUALLY decreased over the 35 years, but it's still there 100% of the time. I'm glad to hear you don't have that problem!

I am THRILLED to read how QUICKLY you were able to adjust to your prosthetic limbs!!!! That's wonderful! If I really concentrate, I can walk "properly" and no one would know. But if I'm alone, I pull all my weight back to my heels...where there's no pain.

I have never met anyone who is a survivor of MM...nor anyone who has my foot problems. I can tell that the doctors have learned about MM and DIC via "books."

I'm hoping that we members of this wonderful Meningitis Trust site can help each other via solutions learned thru experience.

[Tiga in reply to legless7397]

wow 7397 you are a brave and fab person, and sounds like a very strong person, great blog, i wish you well,

[legless7397 in reply to Tiga]

Tiga

Thanks for the support but I do not believe I am brave for regaining my mobility, When I first found out I was to loose the lower limbs I set myself a target to walk again within 9 months, I surpassed this and was walking again unaided within 6 months, I did this for myself as I wanted to regain my life as much as possible and this would not have been possible without the support of a loving family who were supportive of what I wanted to achieve. While in hospital all of the family were told the same thing which was " if I can do it myself I will if not I will ask for help" and this was also useful in helping me to get better.

[Tiga in reply to legless7397]

wow walking after 6 moths that's outstanding. AND you are brave, you had to go threw so much, and you got there, to me thats BRAVE, like your style