Sometimes I Feel ......

Sometimes I feel:

1. like going outside and just screaming 

2. that I just want to walk away from the whole situation

3. that there is no way I can take any more and can't cope

4. very angry with everything and everybody (including myself)

5. frustrated because any progress is so minute and also because so often I can't understand what Pete wants to say

6. so terribly sad for Pete.  I think back to how he was and imagine a conversation we could have had. Would he have wanted to live being so affected by the stroke? I know he would have said "definitely not" - but now it has happened I wonder what he thinks to himself and how he copes.

7. guilty because I can still do everything, go out and speak normally.

8. resentful that I have had to give up the life I had.

9. scared for the future. Will it ever improve? What if something happens to me - who will look after Pete? 

10. utter hopelessness and despair. I know I can't make it better and wonder whether I am doing ok or not and is there more I could do to help and support Pete.

11. so very lonely.  It feels like we are the only couple in the world going through this - although I know full well we are not.

12. like I am such a nuisance having to ask others to do anything for us

13. grateful that at least Pete is still here and understands everything

14. more anger that WW won't leave us alone and makes life even more difficult at every opportunity

Wow, this is such a self pitying post, but sometimes everything just overwhelms me and there is no-one to listen to me moaning on.

Some of these feelings just come and go but others are there all the time.  I think the emotion I feel the strongest is sadness that Pete has lost such a major part of the quality of his life - and also lost his status in the family.  He can never join in a conversation which is horrible for him.

I think that just about covers most things.  The only feelings that elude me are joy and serenity.

WW Back in Action

So, WW (whoever, whatever) has been very busy and is totally back in action to make sure we have problems! 

Following the problems last week with the Sky TV installation, a different engineer arrived this Tuesday and actually set it all up with not too many problems.  He hadn't realised someone had been before  but he got right on with it, set it up, explained it all and was generally very pleasant and helpful.

Yesterday we were due to switch to Sky for broadband and phone.  Broadband went very smoothly and we were only without it for about 20 minutes, not so the phone!  WW woke up and got to work!  The phone never came on yesterday, so on the phone to them first thing this morning and the girl was very helpful, she rang me several times to say what they were doing and at about 11am said someone had to get it unlocked and they would ring me in about an hour.  And there we go, end of story for today and we still have no landline phone.  So, it will have to be an action replay tomorrow.

Also today Pete's sister and brother in law were due to visit and we were so looking forward to it.  First thing this morning Pete was sick, and then he kept rushing off to the bathroom.  I assumed he had the obvious and had to ring to let Ruth and Dave know the situation - so disappointed. I have since found I totally misinterpreted the situation and it was actually chronic constipation rearing it's ugly head!  He has had tablets for it but not sure what the situation is with him.  He has only eaten a bowl of soup today so that's not going to help the weight gain. Ruth and Dave did pop in for about half an hour which was really nice but I am still disappointed that it all went awry.  What did I expect though really? 

We had an enjoyable FaceTime session with Adrian last night as it was his birthday and he hopes to come home in a couple of weeks when he has 2 days off work together.  This would be so great but, I have to admit, I am almost certain WW will put paid to that plan in some way or other.  Just have to wait and see - it would give Pete such a lift to see him, and me! 

Other than those problems Pete hasn't been too bad for a few days, but it is so hard to get a smile out of him these days.

I have come to the conclusion I am a very bitter and twisted nasty person!  This evening I went onto a website of a lady trying to raise funds so she can go to America to have intensive rehabilitation so that she can speak, read and write again following her stroke.  There was a video of her and yes,  you have guessed - she can speak (obviously not as fluent as usual) and hold a conversation and write a few words.  Oh, I wish!!!  Yet another one who doesn't know the meaning of REALLY not being able to do either of those thing AT ALL.  I always feel so bitter and jealous when I come across these situations.  Not nice of me but I can't help it.

Feeling Safe

This is going to be a fairly short post as there is nothing much happening at the moment!  Pete's mood remains low and today, especially, he has been so quiet it is quite worrying.  Last night we had a FaceTime session with Adrian which boosted him for a while.  I know he misses Adrian quite a lot as he can't get down here that often.  We are lucky that Martin and family live near and come in often.  

Talking of Martin it reminds me that Mel has booked the Lovely Ladies Christmas Outing in a restaurant - and I'm not allowed to wear jeans!!!  This means I have to get something bordering on posh to wear!!!  This means a shopping trip and Mel and Fiona are going to help me - but I have told them they are not allowed to bully me!!! I am really looking forward to it, the 4 of us will have a good time.  Another thing we have to look forward to is that on Thursday, weather permitting, Pete's sister and brother-in-law are coming for a visit.  Pete will enjoy that I know.

Whenever I go to town Pete always goes on the bed.  As I usually go in the afternoon I haven't really thought about this fact as he goes for a rest every afternoon, but this morning I had a driving lesson and Pete took himself off there which is unusual.  When I go out in the evening he always goes on the bed aswell which has puzzled me a bit as Martin is always here.  Thinking about it today I think he goes there whenever I am out as that is where he feels safe and nothing will happen to him (falling or anything).  This has been happening ever since we went through that period of him not wanting to be left on his own.  It must be quite worrying for him to be on his own I think and if he goes where he feels safest then that is fine. Feeling safe is very important - to everyone really.

That is about all there is to say today. Abrupt end, sorry! 

Thwarted at every turn!

My biggest wish is that Pete would be able to say a couple of words and that something would happen to give him a huge rise in how he feels about himself.  

Failing that, my next wish is that whoever, whatever would just leave us alone and stop thwarting us at every turn.  

The weekend passed quite quietly (I did go out on Saturday evening with the Lovely Ladies, but not for too long as Pete is so down - but at least it lifted me for a little while) and Sunday night was alright with no catheter disconnections!  Then Monday morning WW was back in action!  A letter came for Pete from the surgery saying something from his blood test needed further action or treatment, please ring the receptionist for details.  Straightforward enough until I rang them - there was no way she was going to give me the information, patient confidentiality again.  So I gave her the option to book me a call from the GP or write to Pete.  She opted for the phone call but the GP wasn't in until today - so, no problems, we could just worry about it for 24 hours.  When he rang today it is just that the level of something (he did say what but I'm not sure what it is) is very slightly up and he would like the full blood count repeated in a months time.  He will arrange for the district nurse to come and do that.  He has also put it on the notes that anyone can talk to me about Pete - I was under the impression the previous GP had done that but, obviously not!  

Today I had arranged for SKY to come and install Sky TV.  All sorted and arranged and the engineer would come, whack up the dish and connect us up. No problems.  All permission obtained from our landlord etc.  So he duly arrived just after 10am, checked around for where the dish can go, only to find that, because of some very high trees around us, there was only one place to put it.  And he couldn't get access to that spot because of a large camellia bush right where he would need to put his ladder!  After investigating the possibility of connecting us up to the landlord's dish which is already in situ further along the wall (the landlord's suggestion) it was established this couldn't be done for whatever reason.  Anyway, he is going to cut a bit of the camellia tomorrow and then SKY will come again next Tuesday, can't get here before.  So, not so easy after all.  So annoying and disappointing.

They are taking over our phone and broadband next week aswell, again shouldn't be any problems but, no doubt, WW will arrange for something to go wrong. 

It really gets me down that absolutely everything is such a fight.  I find it very hard to get motivated to do anything.  I want to email an aphasia research group, but haven't found the motivation to do it - I'm afraid of what they are going to say I think, as well as it seeming too much trouble.  This isn't a good state of mind but, at the moment, I can't snap out of it.  I'm sure I will at some point.  I hope so - there we go, that word hope again! 

Hope in all our lives

I am still brooding about the events of Wednesday - it is like a festering wound.  I keep telling myself to forget it but it just keeps going round and round in my head.  How must Pete feel?  He was so looking forward to her coming, had his ipad ready and also the book he writes in to show her, but unfortunately we never got that far.  It is like someone you like and respect comes in and, after a few pleasantries, announces you are absolute rubbish, a total waste of space who will never improve no matter how hard you strive to do so, and will never amount to anything.  How could she do that to Pete?  Thinking back, she did say any improvements will be made in the first six months - if that is the case why did she waste her time all these months? That is when she said the brain cells are destroyed so end of story, she said something about stem cell research not going to go anywhere.  I was always told that you should never hate anyone, you can despise or actively dislike them, but not hate as it is a damaging emotion - but, I'm sorry, my feelings are close to hate at the moment. Just for the way she said it and how it must affect Pete to be told that.

Anyway, moving on, I have been thinking about how much hope plays a part in all our lives.  We all live in hope of some sort or other almost all our lives.  We hope to do well at school and pass exams, etc., we hope to get a good job that will pay well and we will enjoy, we hope to meet someone who will become our partner and soulmate (and I did), we hope to have children, we hope our children will be healthy, happy and do well in life, we hope we will stay healthy as we get older and, then the biggie - we hope to win the lottery!!!!  You see? Hope plays a big part in all our lives.  Not all hopes are fulfilled but it is what keeps us all going.  If our hopes and dreams are destroyed - what is left?  Perhaps you don't agree with that but it is what I think and, particularly now, it is what makes me go on.  

So on we will go.

Bit of a Rant!!

Having only done a post a couple of days ago, I hadn't really intended to post again so soon, but events today have upset me and then made me very angry. So I decided - best have a rant on the blog!!!! 

The speech therapist came this morning, not having been for a few weeks.  After a bit of chat on how Pete was I told her we weren't doing too well on letters and sounds - her response? What we are doing is a complete waste of time and Pete will now never improve on the communication side, not even slightly.  A devastating statement to say the least.  I told her he could now write my name, to which she shrugged her shoulders as if to say 'you wish'.  I asked why then had the consultant said his aphasia will improve slowly over the next 2 or 3 years?  (We hadn't asked him if it would improve)  Apparently he shouldn't have said that and he only did so to make us feel better!  Bearing in mind that he is a very direct person and usually says it like it is, I find that very hard to believe.   

She spent quite a time explaining the brain cells are now destroyed (what, really???) and so can never be repaired.  Does she think we are total fools living in a fantasy land?  WE BLOODY KNOW THAT!!!  But as the consultant, and also the previous speech therapist, spent time explaining that, hopefully, repetition, repetition, repetition will eventually stimulate other parts of the brain to take over these tasks.

I am so very very angry that she sat there and thought it was perfectly alright to destroy us so bluntly.  I think she was out of order and, no matter what her personal thoughts on the situation, she could have possibly said she was 99% sure we wouldn't make any more progress but there is still that 1% chance.  At least we would still have hope.  After she had said it was a waste of time several times I told her I thought she had made her point.  She said she wasn't going to give us false hope and did we want her to leave? Too right we did! 

I can't really understand why she set out to destroy us as she has previously been very supportive but, so be it, she won't be coming again.

Several hours later I still think she was out of order to say that to us.  I have had several messages of support from friends and family and, despite her, we are going to continue as we were.  At least others don't think we are wasting our time.

I appreciate we are never again going to have an in-depth discussion on politics (!!!!) but just a couple of words would do.

Obviously Pete can't tell me what he thinks but how would you feel to be told that?  This could send him back down again but he does agree she shouldn't have said it and he still wants to carry on, but tonight he is very quiet.

Wasting our time? We have all the time in the world.  As my sister said, never say never.

I can't live without hope - it's all we have.

And Again

Yesterday I thought to myself that at least the urine infection must be clearing as Pete doesn't seem to be in as much pain.  Biiiiig mistake!  Whoever, whatever heard my thoughts and put the boot in again.

This morning Pete woke me at 2.30am - yes, wet bed again, but this time it was the leg bag had disconnected from the night bag - ffs why????  It was exactly one week and one hour from the last disconnection!  I can't really tape that connection up as it would have to be removed every morning and replaced every night and it takes ages to get it off.   So again change sheets etc and turn mattress, the only difference was that Pete didn't need to get changed - just wash his legs!  Once was bad enough, twice is a step too far - I dread next Sunday night, what will whatever, whoever think of next?  The trouble is that I can't control my thoughts and they are there before you know it.  I feel we are fighting a losing battle on every front and it will break us in the end. 

The District Nurse came today for a weight check and, although Pete hasn't put on weight, he hasn't lost any more. This is a bit disappointing as I was sure he would have put on a bit.  It was a new nurse so had to go through his diet again, and she said his weight still needs monitoring regularly.  She also took blood for a full blood screen, so await results of that.  

Letters, words and sounds aren't going anywhere although Pete can now write my name - that is, he can if it is the first thing he writes!!  This morning we started with 'Martin' and, for the first time, he got the first 4 letters but then he couldn't do my name - where is the logic in that?  It is very similar with sounds, he can usually do the first 6 or so sounds first time but then it all goes to hell and he has to make a big, big effort to do them again and never gets them right straight off.  It is so hard to see him struggling and getting upset with himself.  Is it worth putting him through it every day?  But we have to keep on trying and live with a bit of hope.

We are really struggling at the moment.  

Here We Go Again!

What did I say? Onwards and upwards! Well, someone somewhere laughed their socks off and put a stop to that! 

Whoever, whatever is in charge of our life, destiny, call it what you will, they decided we had drifted along nicely for too long.  Time to put a stop to that tiny feeling of moving onwards!  

It started at 1.30 am on Monday morning - Pete woke me to show me the catheter had become disconnected from the leg bag, GREAT, a wet bed to sort out!  I had to change all the bed clothes, help Pete get washed and changed and wash and turn the mattress as it was damp aswell. (Then had to be turned again in the morning and dried out).  I'm not sure why this happened but we have now wrapped insulating tape around the connection to make sure it doesn't happen again.  I keep asking myself why we have to deal with these totally unnecessary mishaps - you know the sayings, What goes around comes around, Evil comes to those who evil do, You reap what you sow, etc, etc, well, all I can say is that we must both have done something so bad in the past but I wish I knew what it was.  It may sound silly but I have really racked my brains and memory and, honestly, I don't know what we did to deserve all this.  The stroke and level of aphasia is hard enough without anything else.

Then, as if that wasn't enough, whoever, whatever, threw in another urine infection for Pete to endure (and me in a roundabout way).  Tuesday evening Pete showed me there was blood in his urine, it was really quite red, but then cleared again. So Wednesday morning asked for a phone call from the GP as Pete was obviously in pain again - so, it is back on our old friend antibiotics.  I wish Pete didn't feel such an intensity of pain but it seems that is all part of the stroke effects.

Sometimes it really feels like I am hanging over a cliff,  just holding on with my fingertips, and then someone comes along and slowly but surely, one by one, is prising my fingers off.  I know one day I am going to fall and there will be no-one to catch me.

Candy came on Tuesday morning for a psychology session and, again, Pete said everything was really good. But, this time, I think she guessed it wasn't and after a few gentle questions Pete did admit to feeling low again.  Anyway, it was a good session and quite a lot was discussed and sorted as much as it can be.  As she said, it is a hell of a thing to have to live with and Pete (and me) is entitled to feel depressed at times, this is all part of the process.  There is no magic wand to make everything better - all we can do is try to get through the hard times - but this is difficult when nothing is going well.

So, I'm afraid it's not onwards and upwards, more like backwards and downwards!! 

Success!!

I said on my last blog that I had tried to register on some aphasia forums without success.  Well .....Adrian to the rescue!!  I still don't know what I was doing wrong but Adrian has registered me on two forums called TalkStroke and Speakability.  The TalkStroke forum is a very active one and last evening I put up a request for any tips to help us with Pete's aphasia, and I got a reply quite quickly.  A lady who knows what it is like (although her situation has now improved) gave me a couple of links which may be of help.  There does actually seem to be quite a lot of research going on into aphasia and it may be worthwhile to get involved in some of these projects, or at least find out about them.  She did say that she believes hard work will be rewarded eventually, so we hope this turns out to be true and will continue with our exercises.  We are currently working on trying to get the 'buh' sound but without success yet.  She also said that she had invested in Sky Sports in the hope her husband would get excited and shout at the referee! It didn't happen!  When Pete gets into a rage and starts making loud noises etc I have often wished a word would spontaneously pop out - even the worst swear word would be a delight!!! I have also put up a comment on the speakability forum but this one is not so active so I'm not ever so hopeful.  But it is still good to get involved.

Pete has still not cheered up at all which is quite depressing - I may ring the doctor next week and see about increasing the antidepressants as he is on a low dose.  I haven't mentioned this to Pete so don't know what his reaction would be.  I don't think he realises how grumpy and down he is at the moment.

The only other event of note is that we have got the appointment to see the Urologist on 19th December, so not too long to wait.

I must think of a way to finish each blog - it is always difficult trying not to finish abruptly.  I think I may adopt the phrase Onward and Upward to finish, in the hope that it becomes true at some point.

So, onwards and upwards!!