Double edged sword....

[Pixiefae]

In the past week I've been awarded pip and been approved for a disability blue badge (for parking) due to my disk degeneration. Half of me is relived and the other half is so bloody angry and I don't know why! I'm ashamed and embarrassed that at 38 I have the body of a 90 year old! Does anyone else have these contrasting feelings!

[cazzyme]

Oh yes totally relate to what you are saying I used to say the brain is fine but the.body is falling apart and therein lies the problem

[Jenharri]

Well I do understand where you are coming from. It's yep I am disabled and coming to terms with that.

I'm much older than you 70 in just under 2 months 55 when the degeneration started. Now I'm here and I still cannot except that I can't do the things that I once could. People say I don't look it and still keep myself trim & wont let go but it's a big I CANNOT do the things I want to do in my head. I'm disabled I can't do it. I'm getting there once I have fully accepted it I'm sure my brain & me lol will be in a better place. I need to go with the flow & relax into it. Not let myself go of course just be happy with the things I can do, stop thinking about the things I used to do and stop feeling guilty if I have to rest for a day. I'm getting there slowly but surely.

It's a double edged sword alright.

xx

[earthwitch]

Yes, it is hard to get used to the idea. one thing I always kept in mind with my blue badge was that I had a choice and didn't have to always use it - on a good day I would just park in regular spots, and just use the blue badge spots when I felt I needed to.

[Mahoney0719]

Yes I understand what you mean I was given a blue badge 3 months ago and waiting for the pip to come but I'm 44 and feel like an 90 year old. To be class as disabled now because of my chronic pain that I'm still coming to terms with.

Take care xx Linda

[lowlife]

We have all been angry at some point but anger, anxiety and stress make the pain worse. It took me a long time to come to terms with it and I cried almost non stop for nearly a year until I sorted myself out. I'm still not happy with the way my life has turned out but have learned that life could be worse and I need to manage and focus on what I can do rather than what I can't. There is nothing wrong with my brain, I'm not in a wheelchair and can still drive. You have to adapt to a different life style. You will get there in the end but I do know how hard it is. X

[Catinhighboots]

Me too! Have got pip for mobility due to lumbar ( disks were worn out in my early twenties had Graf stabilisation L4/5,l5/S1) worked for good 20 years now have disc buludges and some stenosis L3/4) am waiting on the paper work for my blue badge, but what makes me feel really old is when my mum who's in her seventies and has had a hip replacement, among other issues has to slow down and sometimes even come back because I can't keep up with her walking pace even though I use a stick, I'm only in my forties and waiting to hear about ill health retirement 🙄

[Pippins2 in reply to Catinhighboots]

Catinhighboits I had a graph stabilisation 20 years ago too on the same discs, have never come across anyone else before who has had that surgery so Just saying hi !! ...Pippins2 x

[Catinhighboots in reply to Pippins2]

Hi I guess you have further problems too as you here, where idi you have yours done I had mine in Essex by Mr Gardener.

[Pippins2 in reply to Catinhighboots]

I had mine done at Queens in Nottingham by Professor Mulholland. My problems travelled south lol . Just had further surgery 6 weeks ago (Coccyx removal ) x

[Catinhighboots in reply to Pippins2]

Ow sounds painful mine went up l3/4 and have problems with c spine x

[Pippins2 in reply to Catinhighboots]

I think very often when you have problems in one area of your spine then unfortunately the problem migrates to another part over time. Yep coccyx removal very painful surgery with no sitting allowed at all for 6 weeks grrrrrrrrrrrrrrrr. ..Pippins2 x

[Hidden]

Yes I totally get you. I am 37 and I have bad hips, back and my left leg clicks loudly when I walk and it hurts. I am also hypothyroid. I am not that overweight either, size 14. I just seem to have a nice list of genetic things passed down from my mum. I got point blank refused for PIP because I have children. Whats that got to do with anything? Yes they need looking after and I do it but doesn't mean I don't struggle. I am lucky though as my husband works full time but he's hands on and helps a lot when he can. My mum helps out too sometimes.

[Oiroiroir in reply to Hidden]

My family have been telling me to apply for a blue badge but because I work part time which kills me but needs are must & it keeps me sain I feel like I shouldn't. I do struggle tho to just go from the car park (5min walk) into work and if I try and go anywhere it would definitely help. I am now overcoming that but when I looked at it it sounded like I could only apply for it if I was on pip, is this the case. I have 3 children and I'm so confused what to do. X

[Hidden in reply to Oiroiroir]

I am not sure. I know a lot of things have changed recently. I don't drive but I have a son with a severe autism and he cannot get help with transport to and from school, the councils have cut the budget right down. We get buses but its a nightmare as he always trips and falls in roads, near roads. Or runs with no warning. I wouldn't worry too much. Just try for it. You are genuine. I know these people make you feel like poo for applying in the first place but if you need it and it will make things easier for you apply, that is what it is there for.

[Bevvy in reply to Oiroiroir]

You don't have to be on PIP to apply for a blue badge BUT my former local authority wouldn't consider me for a blue badge until I got high rate DLA (forerunner to PIP) then it was automatic. They argued that because of my young age I should have DLA IF I was as bad as I stated..... ! I would suggest you apply for blue badge because council should assess you. Why don't you apply for PIP as well? Nothing to loose. Just get help with completing the forms. Suggest looking at CAB website.

I also work part time and have just applied for PIP and will really struggle if I don't get it.

[Catmag]

Yes, I totally identify with what you're feeling.

I have been in constant pain for 15 years now. I have disc damage in lower spine and neck. I also have soft tissue damage in my head and suffer migraines on a weekly basis. I'm 58 but feel more like 88!

When I was awarded PIP in September 2014 it was a relief but also a blow.

Like you I had mixed feelings. I feel I should be able to cope better, that I shouldn't have to be on benefits. I feel like a failure and a waste of space.

But, living with such pain is debilitating and we need to accept where we are. That might be where the anger comes from. Being awarded PIP is confirmation of disabilities. When you're young that's really hard to accept.

Hope you can relax for a bit and maybe the anger will subside.

Take care, Catherine.

[deejames]

I think we need to get angry occasionally. I can sink into the depths of dispair but I can get furious and swear and stamp my feet and with that anger out I get a new determination to do the best I can given my circumstances.

I do get that feeling of embarrassment. Well meaning people say things like ' you've done really well ' when I've managed to sit for a couple of hours in a setting. I feel about a hundred and tend to snap but embarrassment at being singled out from my peers.

All! these feelings are valid and I think it's important not to deny any of them even if we feel they are unworthy in some way. Just not let one particular emotion gain prominence .

Dee

[Catinhighboots in reply to deejames]

Wish I could stamp my feet but it hurts too much😃

[NFDK]

I understand your feelings so well and send you a big, gentle hug. I was diagnosed with CRPS last year. Before the accident that led to the CRPS, I was at the gym 4 nights a week and was really fit. Now, I am 70 lbs heavier, walk with 2 sticks and am on a whole load of meds. I don't feel angry, because it's just one of those things, but I do feel embarrassed to enter my workplace on my sticks - which I got just over a week ago. Having to use the sticks has REALLY changed my self-image. I now feel like a disabled person - which I am, of course - and my Entitlement Card arrived this morning. It's been a steep learning - and acceptance - curve over the last year for me. I really feel for you and I hope that you feel better soon, I really do. Sending you love x

[harryetta349]

Yes I fully understand. At 37 having been fit and healthy athlete until my time in the army I now struggle to get out of bed or walk across the room. I have to use a stick and feel embarrassed doing so. When you park in a disabled bay people give you funny looks as if to say you shouldn't be parking there. It's hard I know but it does get a little easier with time.

[Pixiefae]

Wow I never thought I'd get so many replies to my post - it's nice to know that other people feel the same way.

I feel lucky I get pip it seems so many get turned down for it - think I need to be a little more grateful rather than ashamed of it!

[NFDK]

I feel very grateful for my PIP, as I can only work three days a week now - and that knocks me out for the other four

[Toplady]

I completely understand what you're saying. I'm 49 and have had to use a wheelchair for the last 2yrs due to a severe chronic post pelvic fracture pain and nerve damage. I have really struggled to come to terms with having to leave my teaching career, having to live on benefits, having to use my Blue Badge, having to take tons of medication, having to wear a Butrans patch which people can see, and most of all, having to now realise that this is permanent and irreparable. I am really finding it hard, I am still in the 'angry'phase where I am mad about this new life when I just want my old one back. The life where I was a highly qualified and respected professional who had a good job, a nice car, people who respected me, I could just jump in my car and do whatever I wanted and I could do the simplest things like dress myself. This bloody new life means I can do none of those things, my partner has to take me everywhere and even has to dress me, I HATE this. My Pain clinic consultant let me rant and rage in my appointment and actually listened to me, he was so lovely and I really appreciated it. I also am ashamed and embarrassed, I feel that my life now is so so different and my logical brain is coming to terms with it but my soul is still struggling. I know it could be worse, I know I could have cancer, I know I could be dying but sometimes I just don't care, it's bad enough that my career has ended, that my life has turned upside down, I'm in constant pain and it's never going to end.

Now even I'm thinking I'm crazy and need to shut up!!!Just wanted to let you know you are not alone here with these thoughts, this is a fabulous forum and it has helped me enormously. Best of luck hun X

[Hidden]

Having read the comments on here, it really reinforces to me that dealing with chronic pain really has to be dealt with psychologically as well as physically.

The emotional feelings are just as real as the physical pain that we experience. There is certainly a period of grieving and all that involves for our 'old selves' as we come to terms with our new reality.

For me, I had a feeling of finishing things 'just in time' as my ill health worsened. I had been struggling with pain and then the symptoms of Fibro without knowing what was happening for about 8 years.

I was an Inspector with the Police which meant that I was in charge of a team and had lots of decisions to make on a daily basis. If I got decisions wrong then there could have been awful consequences. The pain finally got too much and I was off sick for 18 months. Fortunately, I was just one year short of being able to retire. After a big fight which left me with a sour taste I got ill health retirement. I felt hugely relieved.

I had been studying part time for a degree with the Open University (OU) whilst working full time. It took me 6 years and the last 18 months were hugely difficult. I never thought that I was going to be able to do it as the fatigue and brain fog took hold. This was in addition to the pain and side effects of the meds. Thanks to the support that I was given by the OU I got through it. A year after I retired. I graduated with an Honours degree in Psychology.

My original plan was that the degree would be a springboard for a second career. However that plan has now been blown out of the water.

So where has this left me? I am thankful every day for the life that I lead. Yes, I am in pain. Yes, the old me has gone forever. Yes, there is no cure for what we suffer from. However, I try to look for the positives in my life. I am grateful for my marriage that survived my 29 years of Police Service. Many of my friends and colleagues were not so lucky. I am grateful for my children and grandson. I am also grateful for what I can still do.

Best wishes to my Fibro friends on this forum.

Dave

[belle623]

Hi Pixiefae

I totally understand! Having a disability of any kind is so frustrating. I am glad you were awarded your status however. Hopefully this will allievate some stress. I often have the feeling of my BD as a coat I desperately want to take off.

You have many talents that over a life time will be relvealed and no disability can hinder. These tools; like disability just allow us to discover and utilize those talents.

Hugs

Ash

[DFZ4835]

Pain sets limits to physical activity for a lot of people. Twenty five years ago I was operated on for stenosis at L 4-5. I thought that pain was bad but have found out how much worse it can be. In 2011 I was diagnosed with stage 4 prostate cancer that has metastasized to my bones. I have gotten through the anger stage and the feeling sorry for myself stage and have now accepted my cancer and pain. I detest taking opioids and have found that if I take CBD I can cut about 3 pain pills a day. CBD doesn't work for everyone but it is worth a try. CBD comes from the hemp plant and doesn't contain THC ( no high from cbd ). I came to terms with my cancer and my self pity when I realized what I was doing to the people I love. I wasn't the only one who was suffering from my attitude. My family had to come to terms with the diagnosis they also were affected by my attitude.

Dennis

[Catinhighboots in reply to DFZ4835]

Sending lots of gentle hugs, Cat

[Sazntef]

Know just how you feel, I was diagnosed with DDD 15 years ago. At 38 I finally relented to the constant nagging to apply for a blue badge to help me a little. Certainly is a huge help to remove that extra walking from parking nightmares in Edinburgh. I also get a guarantee spot at work (still there full time) to save a 2 hour commute each way via public transport. I know that if I didn't have work that I would succumb to the depression and anxiety the constant pain causes.

[Sweetfa22]

Yes. I'm 43 and in the same boat. Had my blue badge for 3 years now and it's due for renewal next month. Still on DLA and dreading PIP xfer next year. My body is failing but we've 5 kids to look after so I can't give up. Hugs xx