Pretending

I had better start by saying I haven't been anywhere on the Internet much for ages. In fact I haven't been anywhere for ages. Ehlers Danlos right now is kicking me hard.
edited to say, I have been around on twitter, occasionally now I even get a reply to a tweet but I am perplexed by the amount of people I have to trawl through to read the tweets I want to, Twitter still confuses me.

GP said to Wheelchair services that I need an electric wheelchair, wheelchair services, say I do but have to write to GP to make sure he thinks I do! Bureaucracy eh.  The Occupational Therapist who assessed me (OT) was so nice it made me burst into tears.  I hate it when I do that, hate it. I am not used to kind.  Theoretically if one can answer the door one is not entitled to an electric wheelchair, but I am no liar, I answered the door to her in my own inimitable style.  However, she used her very nice brain and decided that EDS is very like MS and because she allows MS patients an electric wheelchair then I may have one also.  She also said that perhaps I should have done this some time ago, the whole wheelchair thing. So despite my getting to 47 and not using one it appears I am to.  The whole thing about not using one has been fear and denial.  Fear that should I plant my butt in a wheelchair my already compromised muscles would atrophy and die, fear also if I am being honest that I will get fat as it is true that no output of any kind means no loss of calories, also because I thought that the use of one would make me a failure. Because in our family, we were taught to battle on and on and on....... regardless of the pain.  So I did. 

Now, I find I am all but housebound, I go nowhere because I simply cannot walk anywhere.  I have to face this, deal with it and move on.  I have listened to my Internet friends because as you know outside the Internet I have allowed friends to fall by the wayside. Its not all my fault I know, but someone like me can easily slip into staying in because its easier that way.  So I have had the assessment for the wheelchair.  The OT says, I am exhausted, (is it so obvious or is she just really good at her job) that I should look at the wheelchair as a pacing tool.  Those of you who have studied pain management will know that pacing is an important tool for managing chronic conditions.  And that by using the wheelchair, I may find more energy just to be.  So now if my GP signs me fit for the use of one.  I go to take the wheelchair test to see if I am competent enough to use one.  If I am not very good, they will set it at 2 mph? & if I whizz about and show them I am not going to injure anyone in its use, they will set it at 4mph.  I hate being tested always have.  I have a driving licence so maybe soon I will get a 'she can drive a wheelchair licence certificate'. I am so lucky.  Surely you must sense the deep irony in that.  Lucky lucky me,

I don't normally talk about my personal relationships much here but this time I shall a little. Why because I can't hold this stuff inside anymore.  Husband has let me down big time as he will not push me in a manual wheelchair and I am having trouble forgiving him for this.  Perhaps its a denial thing, perhaps.... (I am unable to self propel due to the EDS).  Anyway not prone to discussing my marital upsets here that is my only comment on that.

Other things on the marital front are afoot but I don't think its blog etiquette to discuss too much? Married now for over twenty years I know there are ups and there are downs.  ....... Its just where did the laughter go? Where did 'us' go?  Has it been stolen by the EDS? I worry that living with me and the demon that is EDS has become to much. But then I am prone to blaming myself for 'stuff'.  There are other influencing factors and those are not me but to discuss all of them here would really be putting it out there.

 Right now, if I could, if I had money, I would run (ha ha fat chance) but I am sure you whoever 'you' are know what I mean, I would run away.  Then if I could I would hold a magic mirror, to see what happened without me there. Would a smile return, a burden be lifted, a life lived with fervour, I am not talking about me.  Would the man that I love, whom I think somedays wants rid of me, find happiness without me or would the demons that I don't want to talk of here, still be there with him.

My children are grown, whilst they would not like it, they would cope. But I don't have a magic mirror, I don't have money.  If I stayed and he went, then they would have to give towards the rent of this house which they cannot afford.  I would get little to contribute to that rent on benefits. Their father works it would be fairer to them if I went.  But I can't and don't know if I want to. I just want the 'us' to return. In all probability, we will grow older together, I sound embittered, I am not, I am a realist, my expectations are that of an adult not a Mills & Boon scenario, it is only the very few who really do have a knight in shining armour, I doubt that any marriage, relationship is truly perfect.  I need to say all of this I know you are probably thinking, they just need to talk.  Its hard to talk if one is not listened to or the subject is changed should there be the faintest hint of serious.  So I am here dear Internet, telling you.  That is sad. The saddest thing of all is we do love each other, its just got all lost in our life.  
(edited to say the following, I wrote all of the above last night, despairing. I mention optimism later in this post and was right to do so.  Out of nowhere, husband announced he was taking me out to lunch & I don't mean Pizza Hut, I am talking posh favourite all time haute cuisine restaurant!!!! Perhaps his ears were burning. This gives me hope, hope is good right? I know its there we just have to find it all. I am not saying everything in life is fixed by taking a gal out to lunch but its a good starting point.....) I am keeping all the relationship stuff in because these thoughts happen I just felt I should include the edit so that you don't think my life is total crap, there is just a lot of 'complicated' in it. I guess thats the problem with talking about relationships as where love is involved its not always simple is it).

I dream sometimes of a log cabin, a view, silence, I crave silence.  Where recession, world chaos, DLA indefinite soon to turn to PIP which will invade my dignity, fear that the small amount of money that helps me cope will be taken, my condition again misunderstood.I digress, I want to go where nature is my constant companion. Where harsh words don't exist. In my cabin I want my cat that slumbers content on an old cushion, on a veranda in the sun.Utopia would be provisions magically deposited on my doorstep.  Don't misunderstand me, I like my home comforts, so to include those would be fantastic.   My mother used to say I want doesn't get, its true. But a bit of me still believes that dreams do come true otherwise whats the point in dreaming. There for a reason.

 I know there will always be pain, physical pain I think now is entwined in my soul.  I wonder sometimes whether it would have been kinder to have turned off that incubator that was the womb where I should have been for three months. That 2lb 2oz baby forty years ago was me.  I can virtually hear sharp intakes of breath as I typed the 'turning off' or the taking away of the tubes up my nose that kept me alive.  A harsh reality which may make some never come here again, thinking that I should not think let alone say 'that',  I know I am lucky, to have two beautiful children, I know I am lucky to have my life. And don't worry I am not suicidal. To explain, for as long as I can remember pain mind blowing pain has been my experience. I only say the thoughts that run through my mind by way of explanation. I cannot help my thought patterns.

Why now when I have coped with it for all these years do I find myself, drowning in pain, slowly sinking as though in quicksand, looking out at the world, a spectator. Screaming silently inside as I try hard not to wake in the morning, hanging on to non restorative sleep, because waking is the beginning of the torture that has become me.  Perhaps that's why I have not been blogging what am I supposed to say. All of the this that is not sweet music to anyones ears.

To those of you who may think, oh its because she is unhappy that her pain has spiralled out of control. You are wrong. I understand the psychology of pain. That stress and pain do not go hand in hand. But I have had years of experience coping with the two.  In all lives unless one is very blessed, then stress pops up from time to time, external influences and internal combined.  So I can intellectualise my state of mind. Clear in my mind.  At times of great joy, pain has been my constant companion, I have a deep furrow between my eyes to prove that it is there. Pain holds no prisoners, It does not care if one is happy or sad.  I have talked before about finding joy in small things, ie a robin that visits each day, its head on one side, nodding good morning.  I am talking of the pain that is me, the one that is part of the essence of me now.

I learnt on a pain management course that pain cannot kill, I knew this anyhow but it is polite to listen. What they failed to say is that pain, steals, it steals choice, robs independence, abducts lives. I can look back now and know without doubt that this is true. For how many who live in pain whatever their condition, live without choices, on the lowest of incomes. I worked, I contributed to society. Now I have run out of give. The few friends I have say I am a good listener. Listening, does not pay bills.  I am you may be surprised to read an eternal optimist, I got that from my mother, my father the pessimist, would say goodnight but not before he stated that, he may not be there in the morning.   When one is brought up by a pessimist, negativity would be easy to catch (that being a small example of his) ringing in my ears would be my mother's eternal optimism, along with an energy that was like a miracle before ones eyes. In her 70's this optimism still thrives, she jollies my father along, whose pessimism now is his main preoccupation.  So for all this time my optimism has prevailed.  Shone in fact.  Harsh words at me, would not stay in my mind for more than a few moments, forgiving so much, always always seeing through that.  So by tomorrow I will drag the optimistic me into life, smiling me, through the pain, pretending. At night when all sleep I don't have to pretend, no one is awake to see the carnage that pain creates.

Well on that note.  I will finish this post. Perhaps it is one of those I should not have written and will in time delete.  Wracked with indecisiveness, did I say too much, was there clarity, it won't help others with EDS to read it how it is for me, will people understand that for some reason those with EDS often don't respond to pain relief, if they even know how much I take, will I be judged.

Oh bollocks to it all, I am hitting publish.

If you want to click on this link to see the type of view I crave
Scroll down to see the log cabin and interior. To state the obvious I couldn't clamber onto the bar stools at the counter, so my ideal cabin probably wouldn't have that. On the bedding etc, mine would be different. Obviously the outside space would not be compatible with a wheelchair but we can gloss over that for the moment. Its not necessarily the location I would choose but I wanted you to be able to share my dream and this was the only way I could think of sharing.  I hope the people that own it don't mind you popping in.  I think my ideal location would be Tuscany, Italy but am not sure a log cabin would be entirely in keeping.So you may see a post soon with my Tuscan dream abode! The thing is with the log cabin thing is I could play JJ Cale a lot.  Alternatively, I would like one near Kim from frogpondsrock, especially Michelle from Living with Bob and lastly but by no means least Sherry from Word Salads the demylinisation of me (is that right Sherry I hope so) anyway you will find them in my I love to read blog list to the right.  Obviously this is a dream so don't worry girls I am not on my way.  I do understand this is the internet and all that Jazz.

Thank you if you have read this far it is a long and troubled post, I feel better for the writing f it.
To Kim - for some reason all of your comments go into spam, it pisses me off and I don't know why it happens.