1st Year Anniversary

[Gemma B-B]

Hello all,

 

So today is one year for me post SAH. It feels like quite a milestone in what has been a crazy year of ups and downs. One year ago today I was down in London awaiting heart surgery.During that surgery I had my SAH, which led to me being in a coma and my journey beginning. Of course I do not have any memory of this (for which I am still thankful) nor do I have any memory of much of my stay in the hospital.

 

I came out of the hospital at the end of February with a few more holes in my head, half a head of hair and a shunt. Here my memories start and the real work of recovery began. The one year mark seems quite a good time to take stock of where I am and where I hope to go. Apologies for the long post!

 

I joined this site at the end of April and it has been a god-send (thank you Karen and to all the moderators). When I first came to the site I had made what I thought was quite a good and complete recovery – I was wrong. I was no longer in pain from the bleed either in my head or spine and my wounds were all healing well. This was good progress, but I still had a way to go! I had yet to really notice or comprehend any of the cognitive changes that often accompany a SAH. My main goals were to get a new hair style and try and return to work.

 

Come May I went to my GP to discuss my return to work. It was then that I finally had the first real glimpse of the cognitive damage caused by the SAH. I had sat some neuropsychological tests just before I was discharged from the hospital and these showed a range of issues from attentional memory to executive dysfunction. They thought that I was operating well below what their estimate was of my capabilities before the SAH based upon my educational background and career.

 

I was sent to re-sit these tests down in London at the end of May and whilst they showed some improvement there were still major areas of weakness that needed to be addressed and overcome. Although I have a vague recollection of sitting these tests in the hospital I recall the ones in May much more clearly. I was especially surprised with how much I struggled with seemingly simple tasks like recalling bits of information or putting together a puzzle. It showed me how far I was going to have to go if I wanted to return to anything like my previous job.

 

The end of May also brought a positive – I was able to be chief bridesmaid at my best friend’s wedding. Something (unbeknownst to me) my family and friends thought would not happen. I had my hair cut into something more normal and was able to spend the day there, walk down the aisle and deliver a speech at the wedding breakfast. All this made my usually stoic husband quite emotional about how far I had come already. 

  

After this I entered into rehab. I was fortunate enough to have access to a range of rehab, both in the place I live and also at the hospital in London. I went to a SAH support group in London, which was useful in letting me meet some other SAH survivors face to face and also in hearing about the cognitive changes and how to deal with them. For me this was really useful as once I knew that it is attentional memory that is damaged I could put things in place to work around it.

 

In addition to this I began to go to a specialist brain injury rehabilitation centre in Suffolk where I worked with a physio and an OT. I spent my summer holiday working with them to overcome my physical and cognitive issues. With their help I was able to make real progress and pick up many aspects of my life I had lost, such as cooking and going out to places I had found too noisy or difficult.

 

Come September it was the start of a new school year. I went into school to undergo a work based assessment to check I was still able to teach a lesson and perform other tasks. I taught my first lesson in 9 months and it felt really good.

 

At the end of this it was agreed that up until Christmas I would do into work to do non-contractual work in an attempt to build up my stamina and get me used to being back in the work place (a school is a slightly traumatic environment post SAH). The goal was to be at 3 non-consecutive days just before Christmas. I managed to meet my goals each week and get up to the 3 days just before Christmas.

 

As I have discovered in my recovery from SAH the positive often comes with some negative. During this time I began to notice that my movement in my legs was deteriorating. Although I had had some physical issues since the SAH I began to limp more and struggle to move my limbs. At first my OT and I wondered if it was due to fatigue with increasing my hours at work.After a range of assessments it was determined that I was actually losing feeling in my legs and it was different then what was apparent immediately after the SAH.

 

Cue another trip to London and a range of tests. On New Year’s Eve I had a full spinal MRI and shortly into the New Year I got the results – the bleed has caused adhesions on my spinal column, which is hindering the movement of my legs. Apparently this is an extremely rare side effect of SAH and usually only found in the higher grade ones. At the moment I can still walk and move about. I have an appointment to see a spinal specialist in February to discuss my options so will have to wait to see what that brings.

 

January also brought a positive as I returned to work and actually began teaching again. I am currently on a 7 month phased return to work. Come the summer I will have to make a decision about where I am and what I want to do next year. At the moment I am managing to go into work and complete my lessons and other tasks. As expected I am finding it utterly exhausting, but am getting there slowly. I am very grateful that this is something I have managed to get back, even in a reduced capacity. Time will tell what I can achieve with regard to work but I am happy with what I have managed thus far.

 

I guess that brings us to today – one year down the line. I still do not know what caused my SAH. It definitely was not an aneurysm or AVM (although I do have an aneurysm in my brain, which is now monitored). I am also going to see a specialist in February to see if they can get to the bottom of why it happened. 2016 seems set to be a year with more medical tests and meetings with specialists; however I am still grateful that I am here for it at all. Whilst I do not know what caused my SAH, I do know that I was lucky to have survived it.

 

I am often quite hard on myself especially around the things I used to find quite easy or simple to do and that are now much more difficult. Many people on here have given the advice to be nice to yourself and remember what the starting point was. I now always try and do that to remind myself is how far I have come.

 

Today is one of my days off from work. I am going to relax, do some baking and then this evening my husband and I will celebrate. For me today is one where I should focus on the positives and all the things I have gained and not lost, because the story could have been quite different.

[Tina]

 Congratulations Gemma on your 1st year anniversary

 

What a year you have had ! Thank you for sharing.

Well done you for surviving through so much and getting back to work.

I hope all the tests go well for you and you get some answers from your Specialist.

 

Enjoy your special day off...relaxing, baking and celebrating tonight with your husband

 

Take care

Love Tina xx

[Karen]

Congratulations Gemma and good to hear that you're celebrating! xx 

[subzero]

Hello Gemma

 

Thanks for your post a year on, and well done.

 

You have had so much to face up to throughout the year ....with the big question no doubt always never far from your thoughts...............WORK . and when will I be back there again.

 

I couldn`t help re-reading Macca`s wise, wise comments in your `Introduction` thread on 30th June last year.

I am sure that by the end of your phased return this year, you will be much better placed to decide about your future in teaching. I do wish you well. As is said often on BTG- listen to your body.

 

By the way, was your aorta stent procedure a total success?

 

How are your family one year on?

 

Take care, you have done so well to face up to your post SAH challenges thus far.

 

Subs

[Winb143]

Well done Gemma and Good luck for the future xx

 

Love

 

Win xxx

[Gemma B-B]

Hello all,

 

Thank you for your kind comments. I have had a nice relaxing day. Never did get round to any baking - turns out that whilst I told my husband to get the eggs for me I forgot to check anything else and we are out of castor sugar. Never mind! Also had an interesting chat with the DVLA and was told it could be another 8-12 weeks for them to decide on my case. Driving is still but a distant dream!

 

Subs - my cardiology team have said the stent in my aorta has been mostly successful. It has not widened it as much as they hoped and I still have to take all my medication. That being said it has stopped me from continuing into heart failure and even with all the side effects of the SAH I can see the positive impact it has had. My next cardiology appointment is March so we will see what the plan is then as I have other defects which will need treatment in time. My family are generally good, thank you.

 

This year has been incredibly tough on them all, especially my husband and my mum. I think they often get forgotten by others in terms of what they have had to deal with, my husband especially. At his work place people have said to him ' your wife is home now, so what is the problem?' they do not understand or comprehend the changes to our lives and the amount he has to shoulder. I know he spends a lot of time worrying about me and whilst this has been tough on me it has also been tough on him and has resulted in a life different to what he thought he would have.  

 

Hope you have all had a good day

xxx

[Louise]

 enjoy getting the first year done and dusted is I found the longest, toughest,

[Chelle C]

congratulations Gemma,

 

First year over and look forward to the next, you have come so far,

 

You returning to work is a major milestone well done you

 

I hope you get all the answers you need from the specialists. 

 

You have been through so much as have your family,

 

I wish you all well and hope you continue to improve as time goes on.

 

Stay strong and look after yourself,

 

Love

Michelle xx

[kempse]

Congratulations Gemma on getting through your first year as well as you have - you have certainly achieved a lot in that year - in fact what you have accomplished in a year following not only a sah but heart surgery and the adhesions too, is I think, quite exceptional and you should feel really proud of yourself.  

 

My best wishes for the coming year and hope your phased return works out well - I'm sure a class of well behaved pupils will help!

 

 

Sarah

[ClareM]

Congratulations Gemma on surviving the first year!!

 

I like your comment on focusing on what you have gained and not what you have lost. We have all lost through SAH, be it faculties, abilities or friends. But the bottom line is we have survived to become better people for our experience. I am sure you are a marvellous teacher and I wish you well on your continued phased return. It sounds like you have a fantastic medical team behind you so hopefully the issues with your adhesions can be helped by the spinal team.

 

You are one very brave lady - a non driving lady nonetheless compliments of the DVLA - and I wish you all the very best in the coming months. Be proud!

 

Clare xx

[Sharlua]

What can I say that has not been said, you have climbed a mountain in many ways, I wish you well on your continued recovery

Your positive attitude I am sure, has helped and will aid new people who come to this site. Those pupils are very lucky to have you. Hopefully your new medical appointments will assist you in getting to the route of your SAH and in helping aid your progress.

I wish you all the best in that journey

Sharon x

[SarahLou]

Congratulations Gemma on getting through your first year.

Be very proud of everything you do and all that you are, bless you, you are amazing.

SL Xx

[Colleen]

Congratulations, Gemma , and thank you for sharing your story and positive attitude. I think we all do well to remember that, no matter what, it all could have ended so much differently. And cheers to your husband and mother for being supportive, consistent care givers. I still think that between recovering and caregiving, the caregiving is the harder path.

Keep up the great spirits and progress. May you be blessed with angelic students!

Colleen

[Daffodil]

Hey Gemma, I hope that the marking of one year out was special for you and your family. It will have marked how far you have come from those early days and been a opportunity to thank those who have supported you so closely for their unwavering love and help. On mine I had a meal to mark it with all those who had done that for me and I treasure that memory.

We share a few traits in our SAH story and like you I still wasn't driving a year on but I hope that this will soon also return to you and bring you some additionally freedom, less reliance and boost your confidence.

You're right about the family and the worry they carry for you, you can't ease that for them but try to get them to talk about it. Subs, any advice as the partner view?

You're doing well, "keep on keeping on " and a big "woohoo " for yourself one year on !

Daff x

[subzero]

Good morning Gemma-

 

Daffodil, thanks for your comments. I see you have put me on the spot.

 

It will be five years in May since Mrs Subs SAH , and I have been `thinking` about putting my thoughts down in a new thread around that time. However I hope some of these comments help a little Gemma.

 

Like you, Mrs Subs was already in hospital getting tests. The shock and sense of helplessness was immense.

Having friends to help and talk to throughout the first year and beyond was so important to relieve the pressure on me. Finding BTG through Winnie three and a half after Mrs Subs SAH was a life saver for me.

 

With all SAH, there is likely to be a personality change and everyone is different in this respect. This can be very hard for your partner who is so delighted that you have survived, but is perhaps confused and trying to cope with the `new you` at the same time.

 

Especially in the early days your tolerance levels will be low, and your comments to your partner and friends might cause them to `step back` because they are not aware of why this is happening. You may unintentially say things to your partner that really hurt his feelings, and he has no-one to confide in.

 

You might be trying to conceal how your recovery is progressing because you want your partner and friends to think you are back as you were. Don`t hide your feelings from your partner- share often with him about your fears.

 

I will use Daffodil`s expression here-  `the sexy things` in your life may well have taken a massive change partly due to your body being weak and you are totally focussed on recovery. But also the SAH may have changed you. So important that you tell your partner how you are. He just wants to know that you want him to understand and help you through your recovery however long it takes.

 

Gemma I could go on and on- sorry that this is a bit lengthy. BTG has so many people who have lived through situations that are helpful to your partner in understanding what you are going through in your recovery. If he is not already looking in- please encourage him to.  (also it might help your mum, who you say is struggling too)

 

Remember- time does heal.

 

Subs

[janey]

Hi Gemma,

 

Congratulations on your anniversary - my goodness, you have had quite a year by the sound of it, with heart surgery as well as an SAH. I think you deserve a big pat on the back. I know it's frustrating when you realise that you can't do certain things as well as you did before but I think we have all discovered that the healing process from an SAH is a long one and improvements can, and do, happen sometimes after many months and years.

You obviously have a very positive outlook and I'm sure this has helped you.

Good luck to you and may the next year see you go forward leaps and bounds with your recovery.

 

Jane xx

[Gemma B-B]

Thank you to all who have commented for your kind words and well wishes. My husband and I went out for a meal last night to mark the occasion and it was nice to have an evening out and a chat about everything that had happened (and to also chat about things other than the SAH!). I still find it odd that it has been a whole year! I keep thinking back to where I was a year ago (which is a little odd as I have no memory of it anyway).

 

I am also hoping to get my licence back sometime soon; however my specialists are now thinking I might need to take a disability driving test due to my movement issues. We shall have to see what the DVLA says and go from there. When I spoke to the DVLA last week they said it could be another 8-12 weeks. I know others on here have heard back recently, so I am hoping this is an over estimation, but we shall see.

 

Thank you for your response Subs. It is always useful to hear from family members affected by SAH as well. As you said there has been some personality change for me. Essentially my personality is the same; however I do definitely have a shorter temper than I had before the SAH. I find that I can lose my temper much quicker than I used to and as the person who lives with me my husband can be on the receiving end of that. You are right that communication is key for this so that any misunderstandings can be cleared up.

 

Luckily for me my husband has been quite tolerant and can take a lot in his stride, however I am sure it has an effect. He has popped on here on occasion to have a look about and  my rehab centre has someone for him to chat to as well. The SAH had changed many things for both of us in terms of our life plans – my career path and if we can have children to name but two, but we are adjusting to this ‘new normal’ for us and trying to find a life that suits us both. Hopefully this year can be one where we keep moving along with that.

 

xx

[subzero]

Thanks Gemma

 

I do wish you both well as you go forward together, and glad you enjoyed your night out.

 

Take care

 

Subs

[Greg 21.01.15]

Gemma, a belated congratulations on your 1 year anniversary.

 

I am in awe that you are back teaching. A challenging job (and rewarding I'm sure) but not the easiest, even at the best of times, and post SAH and with all that your are still dealing with that is such stunning progress. Good luck with the DVLA, just pester, pester, and pester more, they will eventually get back to you. I hope if you have to have an assessment that it goes OK. 

 

If I am honest, I know that I can also loose my temper much quicker than I used to, and I'm still trying to work out why it is. I'm not sure that its directly down to the SAH, for now I assume it's the additional stress that it puts us under that shortens the fuse. I have started doing breathing exercises, to help recharge the mental batteries and smooth some of the rough edges on the bad days, it can help.

 

By all you described you have come an amazing way in one year, and as I am being often told gains can be continued to made well past  year and onwards, so good luck with all that your are still dealing with.

 

All the best

 

greg

[Carolynusa]

WOW Gemma! Congratulations to you for pushing through all you have been through the first year of your recovery. I am so very happy for you.

Stay well and I see no reason for you and I not speaking to each other in this room another year from now.

Good luck with the driving thing

Love

Carolyn

[Gemma B-B]

Greg - thank you for the belated congratulations. Returning to work has been a big challenge and you are right that a school is quite a challenging environment. I imagine that in the long term I will want to do some form of part time work, but I haven't worked out what level yet. I guess that is one of the things the phased return is for!

Interestingly I find that I can do something each day - it is actually my stamina within that which causes me trouble. I find teaching more than one lesson in a row difficult. I imagine that I will never return to teaching a full day, but could hopefully do some form of part time work such as 4 shorter days or something similar. We shall see. I hope your move towards returning to work is going well for you.

 

You could be right about the additional stress after an SAH that can contribute to a shortened fuse. I just find that certain things (such as noises) annoy me much more than they used to and I can't shut them out the way I once did. The breathing exercises sound like a good way of trying to deal with it though.

 

Carolyn - thank you  for your congratulations. I also hope to be coming on here another year from now. Two years down the line, wow!

 

Gemma xxx

[Greg 21.01.15]

Gemma, 

 

A lot of what is describe is quite familiar. Long stints of "cognitively demanding tasks" just doesn't work so well for me any more. Gone is the approach where one head long ploughs through for hours on end, a little more thought and pacing is required. 

 

Re the noise, tell me about, I used to love music and never minded a decent hubbub when we went out, but now these have a real impact on me, especially if I am trying to hold a conversation over the noise. Divided attention, I am told is the activity your brain is doing at this point, and post SAH mine isn't quite so happy doing it! (lazy little......). One of the things I am trying to sort out to try to help with this is getting a pair of noise cancelling headphones. So I can knock down the noise when say on a train or a bus or when I get back to work to knock down background noise. When I find a pair that doesn't cost a fortune I'll tell you how I get on. 

 

I am going in to work next week for a meeting to discuss my phased return plans, joint visit with my OT from Headway, so fingers crossed work are happy with the initial plans!

 

Good luck with your work, hope you find  a balance of hours that works for you and the school.

 

greg

[Gemma B-B]

Hi Greg,

 

Yes it seems like we have been left with quite similar effects. From the rehab I have done in London I know these are quite common side effects of a SAH - doesn't make them an easier though!

 

Noise is an issue for me and can be quite draining. My husband and I live in a hamlet overlooking countryside, so my house is definitely my haven. Although a school can be quite a noisy environment, I am lucky that I have my own classroom so when I am not teaching I can close the door and work in a quiet environment - I am glad of this and that I don't have to work in an open air office or something similar. It is also an issue when going out as well, as you said. All those things are draining and really add to the fatigue.

 

Divided attention is also another issue. I used to do more than one thing at once quite often (such as marking whilst watching TV), whereas now I do one task at a time. Tasks also take me much longer than they used to and I find that I simply have to think a lot more about everything. I have to make to-do lists for every day and constantly check my work, whereas I didn't used to have to do that. It is all quite a big adjustment, but hopefully over time will become easier.

 

The noise cancelling headphones sound like a good idea. I have wondered about some myself as well. You will have to let me know how you get on with them.

 

Good luck with your meeting with work next week. I hope you get a good outcome with them. I am glad your OT is also going in. I think it helps to have that kind of support when returning to work. Let us know how you get on.

 

Gemma x

[ClareM]

Greg and Gemma I feel such an affinity with you both! Noise! Tell me about it, I too can't stand loud noises including my washing machine. I have to time when I do jobs upstairs so they coincide with the final spin cycle! I too have difficulty having conversations when there is a lot of noise going on around me and can't stand loud 'wild' music. (I used to love a bit of Techno-rave, but not now! lol!)

 

With regard to you work returns I have found having a day off midweek to be a saviour. I work Monday,Tuesday, Thursday and Friday with Wednesday being my rest day. I love it, potter about the house, go to the gym, dog walk and generally have a 'quiet' day. It really works for me and luckily I have managed to negotiate the same type of hours at my new job. On the occasions when I have had to work the Wednesday due to staff shortages I have really felt it by the end of the week so maybe that is something you could think about.

 

Be a year for me this time next week, how time flies and how life changes. Good luck to you both 

 

Clare xx

[Gemma B-B]

Yes noise can be a big issue -  the worse thing for me around the house is the vacuum cleaner, when my husband hovers I make myself scarce! I also loved music prior to my SAH. I can still enjoy it, but definitely have to be in the right frame of mind.  

 

Yes the more I am doing the more I think a mid-week day off would be good for me next year. I have also been referred for long-term physio anyway to help with my movement issues as a result of the spinal adhesions, so a day off during the week would be good to do that and to just generally have a break. Obviously being a teacher I do have to do a certain amount of work at home and now I generally do not have the stamina to do it in the evenings after school. I am not really willing to sacrifice all my weekends so I day off the in the week might work. 

 

Congratulations on almost being at a year Clare - you have achieved a lot this past year and should be proud of that

 

Gemma xx