Loss of Independence

What it feel like to have Cervical Dystonia

One of the worst things about having a disability is the loss of independence. The frustration I feel about not being able to do certain things drives me to the depths of despair and sometimes I don’t know if that will ever change. My mental health has been better recently through taking anti depressants, seeing my counsellor and also a lovely girl from SAMH who I see once a week. I have to give myself credit too, as I have been doing everything in my power to get mentally better. I’m doing all the right things. I attend my appointments faithfully and I listen to wellness apps and hypnotherapy apps. I even attended a seven week course to work out strategies for coping with my depression. I try not to talk about how I feel to family and friends anymore and as far as they are concerned I am much better. This is partially true but not the whole story. I still have my moments where I question if I can go on. I’m not at the bottom of a black hole anymore. I feel I’ve managed to climb halfway out but the climb has made me rather numb, tired and lost. Where do I go from here? I have to hold on tight to stop me falling back in. I still have my Dystonia. That will never leave me. In fact it seems to be getting worse. I’m plagued with constant migraines, my right leg is numb from knee to toe because of compression on the nerves at the base of my spine, I’m in constant pain, sometimes unbearable pain. Is it any wonder my mental health is still suffering?

Being on your own with a disability is extra difficult. I have to do everything for myself. I let things slip. The house isn’t as tidy as it used to be. I don’t always do my dishes right away like I used to do . It just doesn’t seem important anymore. I can cope with that. What is also very difficult is the lack of human contact. I would love a huge bear hug, a gentle kiss, a stroke of my cheek and someone telling me I’m doing great . I think as humans we need and crave physical contact.

I have to keep reminding myself that I am a strong person. I have been through a lot in my life and I am a survivor. Do I want to just “survive” though? Do I want to live in pain for the rest of my life? Do I want to grow old on my own? The answer to all of these questions is a resounding… NO. So where do I go from here?…………………..

The Dating Game

Dystonia and depression aren’t the only D’s in my life. There’s dating too. I deliberately decided to talk about dating because I have a disability and somehow dating with a disability can be taboo. I am also a woman of a certain age. Passed my prime, so to speak but much to my amazement men of all ages don’t seem to be bothered by my age. Contrary to what I thought, most men aren’t ageist.  I’ve done a lot of dating over the last few years. Not when I was in relationships I hasten to add. They were relationships not dates, although I did all the usual dating things when with these men, going out for dinner, cinema, drinks, beach walks etc. etc. and had a very good time.

I have never had difficulty getting dates. I’m not saying that to big myself up but in the world of online dating it is easy. However finding the right person is not and I have met many who were not. With some it was a case of no “spark” and with others they were downright awful. Today was such a date. I have found that older men have very strong view points and think nothing of telling you what they think about everything that’s wrong in the world today. It’s like they expect you to sit there, listening intently, dutifully nodding as they spout their garbage without one thought that the person sitting opposite could have a differing point of view. Are these men just never challenged? Have they forgotten how to treat a woman? Do they really feel all they have to do is talk at you and that is enough to make us go weak at the knees?

Today I met a man for coffee. He had seemed pleasant enough on the phone although a bit boring. He brought his dogs with him and we planned a walk with them after coffee. All very pleasant, or so I thought. I explained about my neck and the difficulties I have and got that out of the way. So far, so good. So why then did he feel the need to tell me that he thought the birch should be taken back, corporal punishment was a good thing as was hanging? Immigrants shouldn’t get treatment in our hospitals and there were too many where he lived. I have to say this was not my idea of a good conversation for a first date. I much prefer “do you like the cinema and what films do you like”, what’s your favourite food, etc etc.  No…..I was subjugated to a tirade about various punishments for people on Social Security who committed crimes, yet couldn’t pay their fines and I have to add this was all within the first 15 minutes.

Now my tolerance levels are zero these days. I have lost any ability to hide my true feelings. Is that because of my age or because I don’t feel the need to waste my time on people who don’t deserve it anymore? There was a time I would have sat, nodded and been polite but not any more, which either shows me that I am getting stronger and handling my depression a lot better or that I am a rude cow.

I asked him why he thought it was appropriate conversation for a first date and told him in no uncertain terms that we were completely incompatible. He looked flustered and completely taken aback. He had obviously never been challenged on his views before.  I have very strong views on a lot of subjects but think it’s wrong to bring them up when i’ve just met someone and don’t know their background. With that I appologised that he had come so far to meet me, picked up my jacket and left. It’s not something I like to do but I could not go on a walk with a man who believed violence was the answer to all the problems we have today. I abhor violence in any shape or form.

So another awful date to add to the many I’ve already had. Will I give up? Absolutely not because there has to be a decent man out there and he’s waiting patiently for me to find him. As humans we want and need someone to love and be loved by but as I grow stronger I know I will never settle again for deadbeat men. There are lots of nice men who know how to treat people with respect and don’t just feel that they are entitled to bore you to death with their archaic views.

 

I have inserted a photo of me looking happy as even with depression it is possible to have happy times.

 

My eight month hiatus and strong women

It’s been a long time since I blogged. I seem to write that too much. A lot has happened, some good some bad. The good part is I’ve made some new friends by joining a group of women who meet every week for coffee in different places. I really enjoy this and it fulfils the need in me to get out and enjoy other women’s company. The bad is I spent Christmas and New Year preparing my Mandatory Reconsideration for my PIP, as I had lost my mobility allowance and part of my care allowance after my assessment. It was a horrible time, which drove me to the depths of despair. However I won in the end and didn’t need to go to a Tribunal. I received help from an online Disability group, one woman in particular and if it wasn’t for her I would never have succeeded. Being Christmas and the holidays I could not get help from Citizens Advice or The Welfare Rights Dept. I owe her so much. It’s amazing when someone you don’t even know and will never meet can virtually save your life.

I want to get back to writing down my thoughts again, so I’m just starting with this short blog and devoting it to the strong women I have met these last months, the strong women I already knew and to my own strength which I’m finding again. Depression robs you of so much. It can make you feel weak and worthless but as I slowly start to recover and see my self worth, I feel able to make better decisions for myself. I’m starting to like myself again. I’m starting to realise that I might be disabled but it’s my strength that’s got me where I am today. I’m half way up the mountain. I’ve a long way to go and I’ll probably trip and fall a few times but I’ll get there and I’m excited to share my journey, whichever way the road takes me.

As a little postscript here, the relationship I mentioned in my last blog was ended by me. Even in my depression I knew I didn’t need a manchild. There is strength in finishing a six month relationship to be on my own again. I’ll never accept less than the best. Never again! Onwards and upwards. It’s a fu**ing hard climb.

Come Dine with Me

Cake makes me happy

It’s been a busy weekend as I went out to dinner twice. That’s the way I like it these days because the more i keep busy the less I think. One of my major problems over the last months has been over thinking. Sometimes my head has felt like a washing machine on a continuous spin cycle, over loaded and straining to burst.

On Friday night I went out with my new friend Jane, who is like a mirror image of me in the way she has been suffering from depression. Like me she split up with her partner this year and has found it very hard to cope. Over pasta and copious amounts of wine we talked and talked and as anyone with depression knows, finding a kindred spirit is better than any medication. We didn’t need to explain to each other why we felt so low. We both understood. We know how the pain of depression can at times feel physical. It’s all consuming. I didn’t give her advice and she didn’t give me any. We are both here for each other now and I am so pleased to call her a friend. We have agreed to meet up for dinner and drinks every month. She is someone I will talk to about my feelings because I know I will never be judged by her.

On Saturday I went out with the new man for dinner and drinks. We have only known each other for about 6 weeks but he is so easy to talk to and I feel “normal” when in his company. We talk about anything and everything but he has never commented on my neck and that is mainly due to the fact that i initiate everything so I am always on his left side. If he’s noticed he has never said. I will tell him eventually but at the moment it’s so good not to talk about it. I don’t want to be defined by my Dystonia. Sometimes it’s easier to hide it than at other times and it’s exhausting hiding it too. This is my choice though, as I’m sure it wouldn’t make any difference to him. I laugh a lot when I’m with him and he makes me happy but I will tread very slowly.

Today, Sunday, I baby sat my grandchildren which was a joy as usual and then when my daughter and son in law returned we had a takeaway for dinner. All in all it’s been a good weekend, with good company and three lovely meals. Being depressed isn’t about being miserable all the time. I have my good times but I also have my lows. I fight hard for the good times, as in the past I would have hidden myself away rather than socialise. Now I push myself to get out there and meet people. I need people around me as loneliness makes my depression worse.

Who knows what next week will bring but this weekend has been good. I have had happy times. I tell myself that I’m doing well and I think I’m just starting to listen.

A Time for Reflection

It’s been a while since I blogged. I’ve been having a period of reflection and I’ve also been seeing a new man. It’s in it’s very early stages so I’m not going to write anything about him. I’ve found lately that it isn’t necessarily a good thing to talk about my depression because it’s just been making me feel worse and the reason for this is that I don’t feel many people really understand the bleak, blackness that goes with severe depression. I think a lot of people feel that I should be “back to normal” by now and maybe I’m being negative and wallowing. So I’ve decided for this reason that I will not tell anyone but my counsellor how I really feel, as I am not getting any benefit from being honest. In fact it’s making me feel worse. I think of myself as a strong, intelligent woman who has had a lot to deal with over the years, not least a disabling condition which has turned my life upside down. For now, I just want someone to take my hand, hug me and say “until you feel better, I am here for you. I will listen to you without advice or judgement because I know when you aren’t feeling so low that you are the loveliest, kindest, sweetest, funniest, wild, warm, caring woman.” Is that too much to ask?  It seems to be. So I will try telling myself these words over and over until I feel better and I hope I will listen to them and believe them because at the moment I feel I am the only person who can save me from this hell. I’m free falling and I need to find a safe landing place

 

I don’t want to talk anymore

I get counselling every second Monday. Today was one of these days. I’m still undecided as to whether it is helping me at all. I had counselling after I separated from my ex husband and it seemed to help. This time I’m not so sure. I’ve got to the stage where continuously talking about myself and my feelings is becoming counter productive. I need answers and I’m not getting any. I had been told that I would get CBT but I have been given no coping skills to deal with my anxiety and depression. I thought I would be helped to understand why I am now so severely depressed about an illness I’ve had for over ten years. Why is it affecting me so badly? I mean I’ve always hated it but now I’m finding it hard to live with. I feel my counsellor doesn’t really understand my condition and how badly my mobility is affected. I want him to comprehend what my life is like but I don’t feel he does.

Does talking about things really help? Can talking stop me from being lonely? Can talking bring me good health? Can talking help me deal with all the things I miss from my past life? Can talking stop my anxiety? Can it cure my depression? I desperately want to drive again. Can talking help me with that?

I’m starting to think it can’t. I’ve done enough talking. I’m sick of talking about myself.

Has depression robbed me of my creativity?

Gold Chainmaille Necklace by Marion Paterson

I  read today that one of the signs of depression is stopping doing the things you once loved. Making jewellery was my passion. I couldn’t imagine a life not surrounded by beads and sparkly things. I loved to spend a day in a bead shop imagining all the jewellery I could make and the excitement of going home with a haul of gemstones, pearls and any bead that took my fancy. I remember the excitement of looking through my purchases and imagining the bracelets, necklaces and earrings I could make. What happened?  What changed?  I once had a successful jewellery business. My jewellery was worn by celebrities, appeared on TV and my website won an award from Jacqueline Gold, the owner of Ann Summers. Heady days.

I had started making jewellery as a way of dealing with my Dystonia. Although a debilitating condition, I found that being creative helped my spasms. I attended a few classes and watched YouTube videos over and over again till I learned the many techniques needed to make jewellery. Some nights I’d work well into the early hours to complete an order. My neck would hurt, my back would ache and my hands would be numb but I was happy. It felt amazing to be able to change a string of beads into a necklace or a bracelet. My daughter joined me and took over the social media side of the business, something she was very good at. Eventually because of my illness, it all became too much for me and I shut down the website. I still continued to make jewellery for myself and friends, till this year when my depression hit me hard and I stopped. I have no interest in it anymore. Is it just a natural progression or is it my depression?

I miss it like an old friend.  It feels like something important in my life has gone and I don’t know how to get it back. I feel lost when I’m not creative. Depression and Dystonia have robbed me of so much this year. I want my passion back. I want my life back!

Japanese Chainmaille Bracelet and Earrings by Marion Paterson

My Break Ups

 

I’ve mentioned dystonia and I’ve talked about depression, so today I’m going to write about dating. I’ve had two relationships since my marriage ended. The first lasted two years and the second three months. The second was just a fleeting moment in time that I would rather forget now. He was a widower of three years who assured me he was ready to date and have a relationship. Turned out he wasn’t and when I discovered that he still kept his wife’s ashes in his bedroom, I knew we had no future. I think he just really liked texting, as in the three months we knew each other we must have exchanged thousands of texts. I on the other hand found it strange that a man would prefer to sit in his house texting than go out and do things. It all came to a head after a two day break away by the coast, which was supposed to take my mind of an upcoming operation. He suddenly decided that he couldn’t give me what I wanted. By this time I knew I didn’t want him. We went our separate ways. He to his house with the shrine to his dead wife and me to mine and my cat, to contemplate another failed relationship.

David had come into my life when I became fed up of the dead beat men I had met and had decided I was never dating again. Dating is hard but dating with a disability is difficult and exhausting. I wasn’t attracted to him at first but he said all the right things and soon I had fallen in love. For the first year everything went well and I felt like I was walking on air. After a really bad marriage I thought I had discovered real happiness. I thought it would last forever but gradually things changed. On the second anniversary of our first date it ended badly. Very badly.

I think I went into shock. One minute we were in love, the next I hated him. My life went into free fall afterwards and I was hit hard by depression. That and the combination of health issues and an ESA Assessment sent my mental health spiralling downhill. I felt like I had jumped out of a plane without a parachute and nothing could stop me from hitting the ground with a bang.

Seven months later I’m still trying to recover. Some days are better than others but I still cry at the drop of a hat. Depression has become a part of my life. It’s always there waiting to remind me that my life is a mess, that I’m worthless and unloveable.  It’s become my twin, my evil twin, who lurks in the background waiting to pounce.

I haven’t been able to look at the photo below since we broke up because I was so happy when we took it. It was our first holiday together and it was perfect. I want to feel that happiness again and look at this photo and just think: That was a good time. I was happy. It’s over now but I have lovely memories. That has to be possible. Doesn’t it?

The Pursuit of Happiness

I seem to have been pursuing happiness a lot lately because I have been feeling so bleak and depressed for most of this year. I’ve experienced depression often in my life but with help and medication I’ve always come through. This is different though. I can’t see that little chink of light at the top of the black hole. Life seems black. That’s the only way I can describe it. I’ve had many life events lately which are well known to cause anxiety and depression but I thought I had dealt with them all in a very grown up and adult way but my brain thinks differently and it’s had enough. Me and my brain are having a crisis.

Wakening up in the morning, my first thoughts are how am I going to get through the day? I can literally feel the pain of depression. It cuts like a knife and encompasses every fibre of my body. The pain is physical and the pain is real. This isn’t feeling sad and melancholy. This is looking out of the window on a beautiful autumn day, into a garden of trees shedding their leaves on to the green grass, yet all I see is black, everything is black. There is no colour. It’s like I’m seeing the world through sunglasses.

I was happy when the photo below was taken and I often look at it to remind me what happiness feels like. I love being at the beach and I crave to go there. Since I was diagnosed with the neurological condition Dystonia in 2006, I have rarely been able to drive. I miss being mobile and I miss being healthy but I have to find a way to get through this and stand on a beach smiling again. That has to be possible, doesn’t it?