Struggling to Walk

Having FSH Muscular Dystrophy has it’s highs and lows.

The last 24 years have seen my physical health change so dramatically.

I suppose that comes with the territory of having a degenerative condition.

The thing is it is never fully clear how far the condition will take you. The only thing that is fully clear with people who have FSH is that it affects everyone differently.

The condition isn’t even linked with families.

Although it is genetically passed from generation to generation each person is affected differently.

When you're an Alcoholic

Addiction isn’t something that disappears.

I was having a conversation the other night about being an alcoholic.

With Social Services involved the fact I am an alcoholic is something I haven’t hidden.

I know a lot of people may have kept it to themselves but it isn’t something I’m ashamed of.

The problem arises in the term “alcoholic”.

Mental Health and MEGAN

Since July I have been attending a new mental health support group.

MEGAN CIC is a local group in Medway, Kent.

Medway Engagement Group And Network was established in 2009 and became an independent community interest company 4 years later.

Their aim is to provide a voice for mental health users whilst providing opportunities for people who have or have had mental health issues. In their groups and sessions they allow you to share views and experiences of mental health services as well as any other service in your life.

In addition, they provide a safe and supportive opportunity for service users to share experiences and discuss issues of common concern in a relaxed and informal environment.

The Diagnosis that we were waiting for!

5 years ago we decided to withdraw William from school and home educate him.

It wasn't a decision that either of us took lightly. We thought deeply about his wellbeing and decided it would be for the best.

William didn't take to school. He was a stereotypical child who would do better outside of a schooled environment.

When he joined school in Reception he was top in the class academically. However, one whole academic year passes and everything had changed.
He had made no progress academically in that year and was subsequently near the bottom of the class, he was showing aggressive tendencies around other children and was screaming and fighting us every morning on the way to school.

Ultimately, the child in front of us was not the boy that his mum and I knew.

When all else fails.......

Well it has been 4 months since I last wrote a post on the blog and many have speculated that after nearly 10 years of blogging that I had finally chucked in the towel.

The blog is and will always be a place for me to express my thoughts; despite rumours, I’m not that bright and the blog is exactly what it says on the tin.

To write about a life that I wasn’t living, hiding away aspects that were difficult, made me feel like I was being disingenuous; something that I try passionately not to be!

Yet, to talk about some of the things that have been going on also felt like a betrayal towards Hannah. A lot of the story wasn’t mine to tell and it could easily be taken the wrong way. A majority of the problems here have been with “A”, Hannah’s youngest.

When you have to tell your children that you're psychotic!

For a long time now I knew a day would come that I would have to explain my mental health more to the children.

I have never hidden away the fact that I have mental health issues and many of you would know that I have spoken quite openly about it on this blog.

A Dependant Personality Disorder is a difficult thing to live with at times. Connections, relationships, routines, places and objects all become a place where I can create attachment and dependant ties. If one or more of these get changed or disrupted then it triggers the emotional instability within me.

Once triggered you suddenly feel emotions with greater ease, depth and for a longer time than others do. With the core characteristic of affective instability, which generally manifests as unusually intense emotional responses, and then with a slower return to a baseline emotional state that most people experience; whilst engaging in idealization and devaluation of others, alternating between high positive regard for people and great disappointment in them.

Pride goes before a Fall

My mum used to quote the title of this post to me regularly growing up and at the time I never really understood it.

Ultimately, too much confidence about your own abilities and something bad will happen showing you that you are not as good as you think.

When it comes to my disability I am always cautious. I look to find ways that make my life easier, safer and keep me able to do as much as possible. Either walking or in the wheelchair I take each step with caution; carefully watching and analysing the environment to know where I can go next.

When I was a teenager my mum told me that being disabled was not the end and that there was so much more to being me. This wasn’t for an ego boost but more to show me that I should never give up, that I can do and be more whilst not being defined by what I can’t do.

This has pretty much been the case since then. My disability doesn’t define me at all and I would hope my ability and tenacity to do more would be seen by anyone who knew me. However, all my long term readers of the blog would know that I have been slowly adapting my life over these last years to seek support and have more equipment to keep going; ultimately, swallowing my pride and realising that with the decline of my health I may need a bit of a boost.

I am so tired!

I am so tired.

I am so drained.

I am so tired.

I may have said tired twice but I am sure repetition is a sign of tiredness so am sure you will let me off! You will have to also forgive this post that I suspect is a little ranty and moany but it is needed.

I am currently juggling what seems like everything and not seemingly getting a break.

No Quiche, just Cancer!

I know many have noticed my absence on Twitter as well as here on the blog. This has come down to a couple of things; 1. Focusing on Home Education and recreating a reliable routine. 2. Trying to utilise my time appropriately whilst dealing with personal issues.

Twitter is a great community with fantastic friends. This allows me an outlet to muck around, discuss my parenting highs and lows and have support in difficult life events. The problem isn’t that I don’t want to share my problem but with how to say it and it doesn’t really suit a standard 140 characters.

A Life Lesson and Cake

One of the curses of being a “parent blogger” is the amount of parents that are seemingly winning at this parenting lark when there are days where I feel like I am just about holding it together. I know the reality behind everything; some days are better than others, we are all in it together and all have our highs and lows.

Yet, sometimes it’s hard. The idea that I have to somehow do all the adult things, all the home educating stuff and help guide my children into being “upright and well-rounded citizens” is a bit much. But, sometimes life throws a lesson at you and you have to grab it with both hands and run with it.

William and I recently had one of those moments.

Climbing the Mental Health Mountain - 3 Years on

I recently opened up about the fact that it had been 3 years since I had my nervous breakdown and with that what I was feeling and experiencing at the time.

Today marks 2 things, each that I wanted to discuss here.

Asthma Sucks!

I went to bed late last night. This time I didn't get to sleep straightaway. Instead I was a wake calming a scared, crying and wheezing little boy. Asthma sucks!

For everyone who has followed the blog over the last year then you would know that I have had some awful night’s with James, where we both have spent the evenings in the hospital waiting to see what would happen.

But that wasn’t the first time.

At 5 and 10 months old James was admitted with bronchitis; I have never been so scared in my life. 

In some ways the co-parenting journey started there for his Mum and I. We were in it as a team together; although in different ways.

James was in hospital struggling and his Mum stayed by his side. I have to admit that in that time I rarely went to see James. I was focused on being with William and, in truth, I found it difficult to see James in the position he was in; despite my own health problems I found his vulnerability difficult to swallow.  Instead we tried to keep as much routine going with William. He was just under 3 years old and although he was young you could tell that he was worried; so I took that as my job and focused on him and saw James when I could get support from family.

Luckily he's a little fighter and his smiles were back again. 

4 years later he is having a response between every 2-3 weeks since the beginning of October. His breathing becomes shallow and sharp. You can hear his chest rattle with every breath and it is heart-breaking; then off to the hospital we go.

It’s worse because James is 4 years old.

Why does this make it worse?

Well, honestly, it’s because he's too young to be diagnosed with Asthma.

At the moment every time James is admitted to the hospital they tell us he has had an asthmatic response; this will be his 6th asthmatic response this year.

Asthma is difficult to diagnose when the child is aged between 0 – 5. According to Doctors, as well as the NHS, it's hard to tell whether a child has asthma or another childhood condition. This is because the symptoms of asthma also occur with other conditions at a young age.

There is also find the fact that many young children who wheeze when they get colds or respiratory infections don't go on to have asthma after they're 6 years old.

For example: A child may wheeze because he or she has small airways that become even narrower during colds or respiratory infections. The airways grow as the child grows older, so wheezing no longer occurs when the child gets colds.

Normally, Doctor’s will do a variety of test to tell:

A Doctor will use a test called spirometry to check how the child’s lungs are working; this test measures how much air you can breathe in and out.

They will then treat the child with medicine and see how and if it helps with lung function. Subsequently if the results are lower than normal and improve with the medicine, and if the medical history shows a pattern of asthma symptoms, then diagnosis will likely be asthma.

See, for me, this is all good and I can understand to some extent why they leave it until 5 years old to rule out other problems. However, saying that I am the one that listens and watches my child’s breathing.

James is the cheeky chap; he always has been. I have always said that out of the two boy’s James was born to test every ounce of me as a parent; he is in to anything and everything and will stand there and test every boundary that is presented to him.

He is my livewire and he knows it!

Then there is the James that I was listening to last night. This is my baby boy: fragile, struggling and weak. I hate it!

I know that this and previous times have all just been the start of his journey with Asthma; something that, although they won’t completely diagnose, has been suggested is the route to this.

Over the years both his Mum and I have had are turns at being at his bedside doing what we can, monitoring his breathing, like last night, and just stick by him; hospital or home.

Their Mum and I have got a good arrangement when it happens and we seem to tag team one of the Boys each so we can focus on stability of the other.

The pump James has been given in the meantime does help a little but it doesn’t seem to really support him long term; which I am guessing is to do with the dosage.  This coupled with the steroids they give him short term; they do seem to take the edge of a bit but only until they run out. I just wish that we could have a clear diagnosis now and get exactly what he needs.

I just hope, for now, that he has fewer asthmatic responses this year.

When Facebook went quiet

Facebook has good points and bad.

At the moment, for example, I am really enjoying the memories that look back over the years and show what you were writing about.

Since Sunday mine are showing everything apart from the year 2012. There is a reason for this; this time, 3 years ago, was when I was sectioned.

It’s strange thinking about what happened all that time ago. There are clear memories about what it was like and there are also massive voids.

2012 was a rubbish year.

It was a year where my Marriage was officially over; we had tried for some time to be separated and see each other but all this did was cause more problems.

It was a year where, within the separation, money and debt landed straight at my door. All the debt that had been acquired during the marriage came straight to me. Bing recently made unemployed increased the pressure of this.

I barely saw my children. I had a whole day with William each week and I didn’t really have James until May (When he turned 1) This added to the fact that there was a new man taking on the role of “Dad” made me feel like my role as their father was obsolete.

I had started dating but that relationship was volatile, harsh and in truth unhealthy for all involved. We were constantly on and off and games being played.

Then the biggest heartache that could have hit me, did; the passing off my Mum in the August. It was sudden. I lost one of the most constant and loving people in my life. I stood there and watched breathtakingly as paramedics tried to help with no avail. With that I also saw the two men, my Brother and my Dad, who I respect and love for their strength, instantly fall apart around me.

I felt alone and isolated. Everything around me seemed to be falling apart and I had nothing that I could clearly see to ground me. I turned to drink.

One destructive path is enough. I was on it and walking into depths of darkness. I started cutting myself only so I could physically hurt as much as I felt inside. I despised everything about me.  My life just seemed to simply be on repeat: cut, smoke, drink, and pretend to be “ok”.

Friends and family started noticing a change. Something was different about me but for them it just seemed like I was grieving; why would they think differently? I had no known mental health diagnosis only my Muscular Dystrophy. 

The cuts started to get deeper and deeper. The idea that I was alone and then the added fact that I was in pain constantly with my MD made me feel hopeless.

By November it was clear I needed help.

Unknowingly to me it took one more event and I was done. These cuts were going to be the deepest; I didn’t want to be here anymore. Luckily family arrived, I was erratic and making sense didn’t seem relevant. Eventually the crisis team were called and on assessment, and for my own safety, I was sectioned.

A lot of what happened next is a blur; each day seemed to merge into the next. That was until I sat in front of the psychiatric team. We spoke in length about everything that had happen and then finally they said to me:

“You’ve had a Nervous Breakdown. We believe elements of this are due to you having a personality disorder”.

The relief was phenomenal. Every moment they spent explaining the aspects of D.P.D the more and more it made sense. This was me.

They explained that the nervous breakdown is just an indication that I had reached my limit, not that I was going mad; which I felt like I was. There's a limit to us all and there's a limit to how much you can cope with too. Life had just thrown too much at me and subsequently I depleted the strength of being able to cope.

Once the Doctor’s had listed all that I went through within a space of a year it really didn’t seem like a surprise that I was pushed to the limit. Putting all the pieces together had never really occurred to me; each bad event just seemed to be on the back of another.

Their words comforted me though

“You could have broken sooner. You must be strong to have coped with all that you have”

Three years on and I am only a little bit closer to getting treated. What appears to be apparent is that the strength I showed then has stayed with me to carry on to where I am now.

So my Facebook memories may be quiet but my own are not. I can look at the Facebook void and not be ashamed at what happened. The fact that I have spoken about it is still upsetting but it happened and was the start of my Mental Health journey but more importantly the start of who I am today.

Finally realised I needed Rest!

Some of you may have noticed that I haven’t been about for the last few days. Usually this is down to a mental health problem and I need to hide away and gather myself together. However, this time it wasn’t the case.

I posted recently that I have been doing too much and subsequently I was feeling exhausted. I put this solely down to trying to juggle my extremely hectic life and justified this reason as being one through being stubborn ad proud; I still believe this is true.

I have the boys for half the week and in that time I, as you know, am a Stay at Home Dad who also Home Schools. This is great fun and I wouldn’t change the time I have with the boys or the choice to Home School.

Around this I also work a variety of Jobs. I am a Part time Music Teacher; teaching the Piano and the Guitar. I also work as a tutor for a range of subjects and Pupils.

To then pick up that extra bit of money up I am Quiz master at a local pub; which I thoroughly enjoy.

I somehow manage to juggle all of this together and the normal tedious adult activities like housekeeping etc.

I honestly don’t know how I do and do it all by myself; especially if you consider my disability.

(I am still single and to be honest plan to stay that way for a while, subsequently I don’t have that extra body around to help when I need it)

The problem is that I have the boys over a 4 day period and longer if it happens to be one of the rare weeks.

I work near enough solidly for 2 days. So that only really gives one day to rest. The thing is that is when I do my housework, organising and blogging; albeit reading, writing, commenting and social media interaction. (Although I still manage to fit all of this in during the week too)

So as stated at the beginning it is too much and I am burning myself out.

Mentally and Physically I am feeling it; the latter mostly. I am becoming slightly more unstable on my feet, everything is feeling like extra effort and to top it off I have the pain. Oh the pain!

I get to bed time and I am left exhausted but when it comes to sleep I am having to take extra medication as well as having cream to rub over my muscles to help relieve part of the pain that I am.

This has been the case for months. I push and push and do everything that I can but why?

I said above, and in the previous post, that this is down to my pride and being stubborn. Take that point away and I still get left with the question, why?

A few people over Twitter, Facebook and on this very blog told me that I need to stop and slow down; find the balance and remember that I need to look after myself. It needed to be said and I needed to listen.

So it came to Friday, the one day of the week that I don’t have the boys of work, the day where I do everything else.

This time though I did very little. I worked on the things that needed to be done and then I rested. It was a real eye opener and the main reason was because it really didn’t help!
I was exhausted all day.

It is now Saturday Evening and although I have worked this morning I am just about feeling human again.

When did it take a full day and a half for me to rest and recover?

I know my disability and I know what happens and will happen but unless I have done something extremely physical I have never needed to recover this much.

This, in itself, was the eye opener.

With this I have decided that I will make every Friday a rest day and hopefully find some balance and cut back a little; before this burns me out totally.  

It has taught me just how much I am doing and how important looking after myself is.

Stop being Stubborn and Proud Martyn

I have had an exceedingly long week.

It was a week, as can happen from time to time, where I had the boys for longer.

The main problem though is that in these weeks I am exhausted!

I am a mixture of proud and stubborn; not necessarily a good mix. I am constantly battling against stereotypes or expectations and it is and can be a weakness of mine to beat.

Is this the end of Dating?

“You've never looked at a woman and been totally vulnerable. Known someone that could level you with her eyes, feeling like God put an angel on earth just for you. Who could rescue you from the depths of hell. And you wouldn't know what it's like to be her angel, to have that love for her, be there forever, through anything, through cancer. And you wouldn't know about sleeping sitting up in the hospital room for two months, holding her hand, because the doctors could see in your eyes, that the terms "visiting hours" don't apply to you. You don't know about real loss, 'cause it only occurs when you've loved something more than you love yourself.”

Robin Williams, Good Will Hunting

“Love is the easiest thing to have. Falling in love shouldn’t be difficult; it should be easy, fun and exciting. There shouldn’t be any complications; that should come later. But to start, that should be easy.”

My Mum

I love these two quotes.

The first is from my all-time favourite movie; there are just so many elements to the film that I can relate to. The quote is something that I have always had in my head, way before I even saw the film. Some would look at it and see some hyped up Hollywood style ideal of love and romance. Yet, for me I see that as love. 

My Mum and Dad were examples of this. They would fight like mad at times but in their darkest moments you could see them standing side by side, hand in hand, there for each other. They had this love.

Despite my disability I have always been able to date and have relationships. Yet amongst all the relationships there has always been this awkward barrier between simple, easy love. This, in truth, is usually a fight against being with someone with a disability, like mine, verse the great guy that I am. Throughout the years I can honestly say that I have only had one relationship that started the way my Mum had said. That was the most recent relationship.

Prior to 2015 I stayed single for a while.

In December 2012 I ventured into dating and even tried online dating. At the time I dated someone for a few months and it wasn’t right. She was resentful of the time that I have with the boys and ultimately put me in the position of her and them; as if it was even a choice! 

I decided that it was time to step away from dating and spent over 2 years focusing on myself, my life and specifically the boys.

It was great. I was happy, focused and regained my identity.

This year, in my mind, was my year to meet someone and try again; and why not? I deserve happiness too, don’t I?

I found happiness, It was great. In searching I was extremely cautious in my choosing and despite how things eventually turned out I think at the time I chose extremely well.

 However my last relationship ended around 9 weeks ago so on Friday I decided that I would try again and sign back up to online dating. 

Online dating hasn’t really ever been my “thing” but it offers some advantages; mainly stops the immediate barrier due to my disability and gives people the opportunity to actually chat and get to know me and realise that I am an awesome guy.

Considering it has only been a few days I think I have done well. I have had a fair few messages sent and it is nice that I got that. There have been two ladies particularly who seem really genuine and nice who have clearly taken an interest in me. (So it can’t all be that bad) 

The thing is that I can look at this and see these positives yet it doesn’t feel right.

One of the biggest issues seems to be language. The way they write a message, how they spell, if they use text talk (pet peeve) or even just being able to hold a conversation! 

I have decided then that I will give up on dating. (And delete my dating profiles)

Part of me is gutted and thinks “Don’t give up yet” but I know part of that are elements of my D.P.D and the fear of being alone. I would love to have the love that my parents had. 

I deserve happiness, I know I do, so don’t think that this is me being depressing; I am great when you get to know me. But I am, honestly, sick and tired of looking, of playing the ‘game’, taking the risks that dating has for me and not getting very far, it is tiring.

There are still people that 'wow' and intrigue me or who I enjoy and want to talk to, so I would like to think someone, one day, would do the same for me. I also know that I am pretty amazing if you take the time to find out and although I’m no pin up I am also not in the 'ugly' end of looks. 

Despite this, with my ever progressing health problems, I think it will be difficult to get more opportunities, so instead of searching and being disappointed or hurt that it is time to stop. But who knows, maybe one day.

One thing is for sure, I won’t be actively seeking it. So unless something changes, this will be the end of dating for me.

12 Things I wish I could do as a Dad

I am extremely lucky to be a stay at home Dad. There are many amazing reasons why it is the best part of my week; even my life.

Seeing the children grow and turn into little characters right before your eyes is something I am honoured to be a part of.

I know that I am a good dad because I do wonderful activities, trips and just general parenting, family fun with them; all of these despite any physical or mental health problems I face.

However, despite doing these things there are many aspects of being a Dad that I miss out on; not even just being a Dad but a parent all due to the fact that I have Muscular Dystrophy.

They are all little things that I am sure many people take for granted. For me though, I sit and watch others do it and do have some sadness and jealous over the fact.

Here's 12 things I wish I could do:

1. Put them on my shoulders to see over a crowd so they can watch whatever is happening. 

2. Carry them to bed when they fall asleep in the car or whilst having cuddles. 

3. Pick them up when they fall and injure themselves. 

4. Give them a piggy back ride.

5. Go on rides and fun fair activities; especially a helterskelter ride.

6. Take them to the beach. Build a sandcastle, Bury them in the sand or chase them into the Sea.

7. Play football with them. I'm sure my boys don't overly care that we don't do this but I would love to do physical outside games. 

8. Teach them to Swim, Ride a bike or Ice Skate; the latter especially as I loved it myself. 

9. Hold them in my arms for a photo.

10. Build a snowman with them. 

11. Throw them in the air and catch them. 

12. Sit on the floor and play with them. 

I know that the Boys don't notice these things. I also know that they do so much with me,  we have fun, we laugh and we experience so much that these activities shrink to nothingness for them.

Yet, for me, they are always there in the back of my mind, as I am sure other things will be as they get older. As were the little things that I couldn't do when they were Babies.

For you, lovely reader, if you're a parent then make sure you cherish these little moments. Not everyone can have something so beautiful. 

My Muscular Dystrophy

Last week I spoke openly about having a Dependant Personality Disorder.

This week I have decided to do the same but this time concerning my Muscular Dystrophy.

Despite openly talking about it at times I think quite a few bloggers were “shocked” by how “disabled” I really am after BritMums.

I think the misunderstanding came from two different points:

1. Although I mention it I haven’t really spoken openly and gone into detail about it.

2. I blog about everything that I do with the Boys from arts and crafts to long days out; within this I suppose, from the outside, you would mistake me for a healthy active Dad.

Before I write it in detail though I want to make one thing clear: I don't play on my disability and definitely don't seek any pity; it is a part of me, just as my right foot is a part of me and because of that I don't brandish it about. For me I would like people to see me for me rather than “the guy who has Muscular Dystrophy”

There are a few different types of Muscular Dystrophy; I have a strand called Facioscapularhumeraldystrophy (FSHD)

What is FSHD?

FSHD initially affects the skeletal muscles of the face (facio), scapula (scapulo) and upper arms (humeral). 

Symptoms may develop in early childhood and are usually noticeable in the teenage years with 95% of affected individuals manifesting the disease by age 20. It is a progressive skeletal muscle weakness that usually develops in other areas of the body as well; often the weakness is asymmetrical. Life expectancy is normal, but up to 20% of affected individuals become severely disabled and eventually must use a wheelchair as well as other aids.

Symptoms

•Facial muscle weakness (eyelid drooping, inability to whistle, decreased facial expression and difficulty pronouncing the letters M, B, and P)

•Shoulder weakness (difficulty working with the arms raised, sloping shoulder)

•Abnormal heart rhythm

•Unequal weakening of the biceps, triceps, deltoids, and lower arm muscles

•Loss of strength in abdominal muscles and eventual progression to the legs

•Foot Drop

How it affects me

I am categorised in the 20% of the individuals who have it severely.

Every muscle in my body is under strain and subsequently my muscles “twitch”. This, as stated above, affects every muscle. If I am walking and twitch I subsequently fall or if I am carrying something then I drop it.

FSHD, as mentioned above, affects the body with muscle weakness, what the above doesn’t tell you is that it is progressive weakness; ultimately all of my muscles are deteriorating and getting weaker.

Eventually my legs will get to the point that they will no longer be able to withstand my weight (However light I make myself) The safest option is to use a wheelchair.

My arms, like my legs, will deteriorate and no longer be able to lift of carry things. 

As you can see there is no muscle shape around the shoulder or upper arm. I cannot raise my arm higher than my chest. On this arm I have trouble lifting anything like a cup of Tea or heavier.

It already affects my speaking and I am known to slur my words especially when tired. Like the arms and legs this deterioration will happen to the point that my facial muscles stop working. 

Every single day I wake up in pain. My muscles don’t feel refreshed first thing in the morning. They ache and feel tense, EVERY muscle in my body feels like it is trapped within a clamp and by the end of the day they feel hot. This is then coupled with joint pain that goes hand in hand with what’s happening with my muscles and every joint feels like someone is pushing a large object between the two joining bones.

My health will get to the point where I potentially become immobile and possibly lose the ability to talk. If you were really observant though you will notice that I stated that every muscle twitches; this does include muscles of my heart and lungs and could lead to serious medical attacks.

I choose my Life

You would have noticed that I said that it would be safer for me to be in a wheelchair; however, it has been recommended that I do this but as it will continually get weaker, this would speed up the progression.

Every day I live with the pain. Every day I live with the fear that my muscles around my heart and lungs will twitch to the point that I could die. Every day I disprove that this is my last day!

I walk because I still can. I go out with the boys on trips so they have an enriched life. I do what I do every day and get up and do more! I disprove the doctors on every prognosis they have given. 

(According to them I should have died 4 or more times now and be a lot weaker than I am now)

This is my life and I am happy. I am happy because I get out, see people, play with my boys, educate them, I love and enter relationships, I work and teach children. I do this because I will always defy what my health decides and find a different way of doing it. My life is SO much more than health issues. I am kind, caring, intelligent, creative, cheeky and will do anything for anyone; as a previous post states “I am Amazing” and not because I deal with my MD.

I try not to worry about “what if's” instead I live in the now. Today I touch people’s lives  for who I am as much as they touch mine. Today I am me.

What counts in life is not the mere fact that we have lived. It is what difference we have made to the lives of others that will determine the significance of the life we lead.

Nelson Mandela

Having a Dependant Personality Disorder

So as a lot of you know I have been having a couple of rough weeks.

I have a Dependant Personality Disorder.

Dependent personality disorder; What is it? 

Dependent personality disorder is characterized by a long-standing fear of being abandoned or separated from important individuals in the persons life and subsequently a need for the person to be taken care of.

This leads them to engage in dependent and submissive behaviours that are designed to elicit care-giving behaviour in others; Ultimately individuals may be seen as being “clingy” or “clinging on” to others, because the person fears they can’t live their lives without the help of others.

If I lose someone I try and fight for them to stay in my life, even if it causes a detriment in a small space of time.

Individuals with D.P.D are often characterized by pessimism and self-doubt, tend to belittle their abilities and assets, and may constantly refer to themselves as “stupid.” 

They take criticism and disapproval as proof of their worthlessness and lose faith in themselves. (Hence my recent post “Am I the Bad guy”)

Social relations tend to be limited to those few people on whom the individual is dependent.

The main features 

1. Has difficulty making everyday decisions without an excessive amount of advice and reassurance from others

2. Needs others to assume responsibility for most major areas of his or her life

3. Has difficulty expressing disagreement with others because of fear of loss of support or approval

4. Has difficulty initiating projects or doing things on his or her own (because of a lack of self-confidence in judgement or abilities rather than a lack of motivation or energy)

5. Goes to excessive lengths to obtain nurture and support from others, to the point of volunteering to do things that are unpleasant

6. Feels uncomfortable or helpless when alone because of exaggerated fears of being unable to care for himself or herself

7. Urgently seeks another relationship as a source of care, love, reassurance and support when a close relationship ends

How it affects me

I can make everyday decisions, like I know I have to get dressed in the morning but there can be times when I have spent more than 20 minutes, in a panic, looking and trying to work out what to wear. I am lucky in these cases as I have good friends like Ally, who I just message some pictures and she picks for me.

These can be “minor” but in other ways they're not; these are decisions that need to me made. They also include bigger decisions like “What do you think of the flat, have I made the right decision to move there?”

I can put my point across if I feel like I have been treated badly or if I am backed into a corner. Yet, despite this it feels completely against my nature. I hate arguing, hate having to put a strong view point across as I am fearful that whatever I do will cause a massive ripple.

An example of this recently is where I have sought friends to read posts that I have written and give me their opinion on whether or not I will upset anyone. It is without the reassurance that I have a fear and self doubt and see any disapproval as a reflection on me.

“You haven’t made me feel like an idiot, I have done that myself” I look at a scenario and blame myself totally for it; It must have been because of me and my actions.

I am notorious for struggling to start a task without motivation. I am grateful then for people who go “i'd love to see one of your drawings, let me see later how far you have got” this gives me motivation to do something.

When I lose someone close to me, or have individuals (like my Boys) that become absent my initial response is to seek support. Yet, this is the main reason why I hide and have days “off”. If, potentially, i can cope with utter isolation then I am breaking against what my initial D.P.D reaction would be.

It isn’t pleasant though. I cry, feel panicked and scared as I want to talk to someone, anyone, get them to help me through whatever is wrong. I become dazed and confused and really struggle with what to do, to eat, wear, write or entertain myself. The problem is that if I did reach out at that time I would only be, mentally, replacing one person/activity with another.

(In the sense of dating I would hate that, it's disrespectful to the old person to be “forgotten” about and unfair for the new person to be used)

Then there is a break in routine. Routine is something in itself that I am dependant on. Having people message at set times, or to have days where I see them regularly, if that changes it triggers aspects. The absence becomes a massive void and will always seem bigger than what it is.

In the past I have been moaned and criticised for not understanding space, or that I should expect someone to talk or message. This of course I respect and understand.

Yet, for example, if one person messaged me every morning for a month and always between 8am – 9am and on one day didn't, my mind would jump automatically to the conclusion that I have upset them or, as above, that it is a reflection on me. The problem then becomes bigger, because at that point I come across as clingy, pathetic and needy.

This though, I believe, is a reflection of that person. If you have taken the time to build up certain routines and know full well that I have D.P.D then they would, politely, take into account why I would behaving this way; I know it can be draining, take Ally's recent post about me for an example. But even she messages me with prior warning or understands that whatever I say it is just the D.P.D flaring.

When it comes to social interactions I am known to have panic attacks. If I openly acknowledge that this person is becoming close and that they may end up being a dependable person I automatically panic and become anxious.

The reverse is true too: one of the biggest thing is if I make a decision to create an absence in my life with someone I am dependant on. If I decide to take them out of my day to day I become panicked, full of anxiety, I hate myself, and go from coping to being a complete mess.

On the whole this is why I hide and don’t talk to much. This is also why I limit close friendships and am guarded with people and, ultimately, why I have been single for the last 2.5 years; I wont let my barrier down for many people as it runs the risk of triggering the above points; they have to prove to be worth it to start.

So this is D.P.D and this is what I go through every day at the moment. This is me at my worst where everything has flared. I do know though that within time I will get my balance and guard back up and be keeping it at bay again.

Where I've been and Whats been going on!

I know a lot of you have been wondering what’s been going on with me and where I disappeared to.

This is complicated but I thought for the moment that I would try to write and explain some of it; even if it just helps to write.

Last week was a bit of a mundane week where nothing exciting or blog worthy was happening. I tried then to explain this in the post “Have I lost my MoJo?”

In that week my current relationship was rocky and I really didn’t know where I stood. My health seemed, at the time, to be the issue and a period of ‘space’ was needed for her. Then to top it off I realised that I wasn’t going to have the boys this week as they would be on holiday.

This all sucked. I knew that my D.P.D would flare.

However much I respected her wishes of space this is something that I personally struggle with.

As you all know I have a dependant Personality Disorder. This in general can be people that you are dependent on but there is also an extension of routine. For example: Getting good morning messages or texts wishing you good night. Something so small can have its effect on you, especially if you didn’t realise that you were dependent on the.

The absence of these, as well as the space she needed, seemed to become massive.  Triggers affected my behaviour the need for security, reassurance and confirmation of what is going on; or to put it more concisely you appear “needy”.

Within the week I struggled but I am and was incredibly lucky to have a good network of friends to keep me going. Ultimately though I couldn’t do anything until I knew where I stood and if I could find out what was going on I had to find out and to do so without saying or doing the wrong thing; I’m notorious for tying to quickly and saying the wrong that eventually just makes things worse. (Or is that just being a man?)

Sunday morning came round and what seemed the inevitable had happened; I was single again.

We had, in fairness, only been dating for 3 months but for me to even be dating that long is a massive thing in my book.

Yes, I have had dates, and yes I have had dates that I thought were alright but I never fully committed for one reason or another; I especially would have never introduced them to my boys.

This lady was different. Everything, for the first time, seemed to just work and it wasn’t complicated at all. (Which for me is saying something considering how complicated I am)

One thing that I won’t do here is talk really openly about it as it’s only fair that I keep this mostly private; there are always two sides to the story and it wouldn’t be fair for me to write mine down completely without her version. She deserves that respect.

Despite anything that has been said or done, I won’t ever say a bad word about her. She doesn’t deserve abuse or aggravation; who does when they’re only doing what they are feeling? She deserves to be respected for so much more than these last 2 weeks.

The problem was that in the time of ‘space’ she didn’t have that urge to ‘run’ back to me. She has feelings and they’re more than just friends but she really didn’t, and still doesn’t, know if they are enough to try.

I know a few of my closer friends know what was going on from the in’s and out and they had their opinion coupled with fiercest loyalty to me; as all good friends do. For me though I can’t see that she has done anything that doesn’t sometimes happen in life.

There isn’t then much more to say apart from that I am just gutted. I miss her; miss so much more than just having someone around and for the first time in ages I can distinguish those feelings as being different from my D.P.D ones. It is her as a person that I miss.

There’s a hope, despite my friends views, that wishes we could try and see if we can work things out but this, sadly, isn’t in my control. I can’t force someone to do or feel something that they don’t have; it would have been nice just to think that she would have wanted to try and just see how things went, whatever the future outcome because she ultimately thought I was worth that risk.

So who knows what will happen but I am trying not think about that one way or another.

Instead I have to focus on some other aspect. For example: the hardest thing at the moment is getting back to normal whilst battling my D.P.D.  My emotions, just like my thoughts, are very erratic. The D.P.D aspect of it all is tough; the hallucinations that I get when feeling worthless, scared and guilty are back. I know these aren’t real though so as usual I will have to push through them and to remember it’s the annoying side effect to the emotional aspects of my D.P.D. I’ve gone just over 3 months without them (Which is a first time ever) so I am sure I can get there again.

I need to create a routine based on everyday things and from that get some part of me back that is currently feeling lost. I know for one that the fact that the boys are on holiday isn’t helping as that alone is a break of routine that I am struggling with.

So that my lovely readers is what has been going on. For now I might still be struggling a bit but I know by the time I get the boys back and get a routine that everything will slot in and resume as normal. Just know that even though I am quiet that I am pushing forward to sort myself out in the only way I know how.