Cautious Hello

ToastierShorti

This is a first post from me, and a nervous one.
I'm not sure what I am able to give or expecting from this forum, but it feels right to be here, so here goes...

I have five vertebrae in my neck badly damaged by osteoarthritis and am currently under a neurosurgeon (figuratively speaking!) awaiting a double anterior cervical fusion later this year. I had a cervical foraminotomy and laminectomy a year ago. I have weakness in my arms, making the smallest thing seem like a great weight, find it hard to hold things, prepare meals, write and do the simplest task.

I also have painful osteoarthritis in my lumbar spine, in an area operated on about fifteen years ago, knees that give way at a whim, that have both had an arthroscopy for tears caused by rough bone. My ankles frequently swell, are painful and I have regular recurring achiles tendonitis.

I phoned the helpline last week because I find it hard to tell people, especially my family, how I feel a lot of the time and that includes my GP, even though he has been very supportive. I don't tell anyone how I'm feeling, what hurts, I just try and get on with it, but I can't do that so easily anymore. I'm known as the one in the family who helps everyone else sort their lives out, but now I get so tired being in pain all the time.

During the last year I have found it more and more difficult to cope, finding myself getting upset because as each month passes, it seems I am able to do less and less (in the way I used to).

I suppose I just feel like my life is spiraling out of control faster than I can wind it back in.

I think I am here because I want to learn how to manage my life again and need help in doing that.

I'm actually a positive person, though this post doesn't reflect that, I find reasons to laugh and smile every day, love seeing what nature achieve no matter what elements she is given to work with. I'm studying with the Open University, and try and be a fun grandma to my nine (nearly ten!) grandchildren.

Thank you so much for ready this far...

valde

Hello ToastiaShorti
A very warm welcome to this forum. I am newly diagnosed with Rheumatoid Arthritis and only joined this forum last week. Please keep looking on here because I have had so much help, advice and support in this short time and am so glad I found it. I know what you mean about not always talking to family and friends about aches and pains and also tiredness but on here you are never made to feel guilty about wanting to express your concerns. Also I ask lots questions and someone always comes up with a reply. I have three grandsons so want to keep as active as I can. I really wish you well x

babytiger

Hi ToastierShorti

welcome to the forum ,you have come to the right place. We are a great bunch and there's always someone that can help or if you fancy a moan , go ahead. Its the best site I've ever found .
Eileen x

elnafinn

Hi ToastiaShorti

You have my sympathies. I had a C5 Vertebrectomy and C4 to C6 cervical fusion in September 2011 due to compression of the spinal cord. I still have some symptoms but not as bad as they were. At least further damage in that area has been stopped. Of course the vertebrae can become weak now under the op site. I have been told if I have difficulty lifting my arms upwards and in front of me then to seek medical help fast. So at least I have a clue as to what may be amiss should I begin to have problems lifting my arms. I have a feeling and so does the surgeon that my symptoms were gradual over a good number of years and it was only when I really began to notice things were not right that I went to the gp and was referred.

It did take about 18 months to find out how I would be post op and I did notice improvements over that time. My walking is still not always that good - it varies from day to day. I notice it more when out walking. Around the home I have no problems. I do walk out every as I think this is important for me to do especially so that I do not lose too much confidence but it is quite difficult some days and I really have to concentrate. My left side is weaker than my right side.

I am sorry you are having to go through all this. It is a worry but like you I will not give up without a fight, I carry on and stay positive - most of the time.

Wow, 9 grand children! I have one. They are a tonic, aren't they but can be tiring but it is a happy tiredness.

Elna x

dreamdaisy

Hello, what a brave first move and you did it so well. It's a pleasure to meet you and I hope the forum can give you information as well as support.

I am 53 (very shortly going to be 54 how the *%^£ has that happened? ) and I have psoriatic arthritis, the joint damage from which has led to osteo in both ankles, both knees and recently my right hip. I have been reliant on crutches for years and have now graduated to a rollator which has broadened my physical horizons - I can queue again in shops! As the years pass I find my pain levels increasing and what I can physically achieve decreasing but I have found ways around things, e.g. I prepare food and cook sitting down and if it's a bad day I start preparing food earlier so I can take my time over it. I changed our bed on Saturday, it took all day but it got done. That's the bit that counts.

From what you have said it sounds as though the time for putting you and your needs first is here and there's nothing wrong with that. It's not selfish, it's essential because if you don't then you won't have the reserves to help others. I think there's little point in telling friends and family too often about how rough things are because it's a never-ending plaint but that's where we come in; there's usually someone around to listen to a moan and we do understand how difficult things can be from time to time because we are all floating along in similar boats. Come and talk to us for the bad stuff (and the good stuff too), take the time to read some of the current threads so you get a 'feel' for all of us and I hope you post again soon. I wish you well. DD

daffy2

Welcome ToastierShorti(there must be a story behind that!)I hope you can see from the replies you've already had that you've come to the right place, among people who've been there, done that, got the t-shirt so to speak, and so can sympathise with the difficulties you are facing.
As DreamDaisy says it is now time for you to concentrate on yourself more. It won't be easy either for you or those around you - old habits and expectations die hard! - but there is a life for you out there, just different. I like your 'smell the flowers' approach, it's a good one, but if things get on top of you please let off steam here, you will feel better for not bottling it up, and we will understand.
There are laughs to be had as well, it's not all doom and gloom(mind you some of the folks here have a way with black humour even in dire straits!)

barbara12

Hello ToastierShorti
Its lovely to meet you only sorry you had to look for us in the first place, I have 4 GDs and more or less brought the two eldest up, I find it hard now the youngest is 7months and I cant lift her...so she is put on my knee,.,till my arms tire...but I do love the distraction....
I do think you needed to open up, and being on here and able to talk to people that understand some of what you are going through will be a big help to you.
I do hope to see you posting more very soon xx

kentishlady

Hi and welcome to the forum from me too. I am an OA sufferer and as the others have all said we all know what the pain is like and that is why we come on here to support one another, share a moan, give advice (if we can) and generally help each other to 'keep going'. Hope to see you around often. Take care of yourself. We all know how difficult it is to cope with the problems.

Beryl.

frogmorton

Hello Toastiashortie

I am so glad 'it feels right' to post on here

You ahve already had some great responses and I have nothing to add other than welcome welcome to the forums from me.

I can promise you will get a LOT out of them

Love

Toni xxx

villier

Welome TS

You certainly have come to the right place, I personally have never met as many helpful supportive people in all my life, as Daffy said it is not all doom and gloom as you will find out for yourself, most people hang out on LWA and chit-chat, feel free to post anytime, there is always someone about for support when your feeling low, hope to see you around ........tc..........Marie x,

dreamdaisy

Hello again, ToastierShorti, how are things with you today? DD

constable

Sorry I have not seen this until today. But would like to welcome you as well. It does take a lot to make your first post, so well done.

You will find plenty of helpo and advise on here. Also the chance that you can went how you are feeling. We all do it when needed. And it is so nice there is always someone who will make you feel that tad better about about things.

Keep on looking and keep on posting, you will find out so much on here and make some really good friends.

ToastierShorti

Thank you to everyone for their kind welcomes. It's strange having somewhere to go and just say how I'm feeling, and people understand. Good, but strange... at the moment anyway.

I've been trying to knit a jacket for the soon to be grandchild No.10. The baby is a complete surprise after failed IVF, and this little miracle is an extra special blessing as it was made a few weeks after my daughter in law's mum died. Knitting is not something I do now, but after weeks or persevering, I'm nearly finished and so pleased I kept going. I chose a bobbly wool to hide a multitude of sins and it's worked! I'm really pleased with it. Just need to make the cute little ears for the hood and I'm done. My fingers are not impressed at all, but they have just had to put the extra effort in to be rewarded with a rest on a hot water bottle, which they love!!

I told the specialist last week that I wished I could take my head off my neck. Made him smile as my name is Marie Antoinette!! ToastierShorti is an anagram of osteoarthritis. I was bored in a hospital waiting room one day and well, I'm not sure my brain works quite the same as other peoples, but that's okay, we've been together now for nearly sixty years (in May) so I'm used to it.

I'm thinking of buying a steering wheel ball for my first ever own car. I've just bought my father in law's little automatic from him. I've always driven my husband's car since learning to drive when I was fifty. The automatic helps as I don't need to use my left arm so much. I was wondering whether a steering wheel ball might help even more. Does anyone use one, and if so, how do you get on with it?

Pain, yes, that's about today, but I'm okay with it at the moment.
I'd just like to say again how glad I am to have found this forum, and hope I can give something back and not just take.

xx

stickywicket

Hello from me, toastiershorti, and congratulations on the forthcoming grandchild.

About the steering wheel ball - I'd attempt to try before you buy. Our situations are different in that, when I first had driving lessons I'd already had RA for about 17 years and my hands and shoulders were affected. My first instructor decided one of these would be helpful for me but I almost succeeded in wrapping the car round a lamppost at the first turning as my arm wouldn't stretch to the very top of the steering wheel :shock: Without it, I'd no problem though. There are a lot of adaptions can be made to cars. I took mine to a guy recommended by Motability and he was great. I hope you find a solution.