Super Mario

Hi Jan, My SAH was 12 1/2 years ago and I couldn't return to work as my balance is badly affected.

I asked myself the same question, how do I fill my days?

Eventually I did volunteer work, helping in an infants school, only reading, for one afternoon a week. I went on to sit on their governors as well.

I also did Youth Mentoring for our County Council which took up a few hours a week, involvement with Social Services and the like. As you know I moderate on here and spend much time in front of the laptop.

I have had my garden made accessible with raised borders and tubs, the watering, planting, starting things off from seed takes me loads of time as it is not easy.

I am unable to do my own housework so that didn't fill any time so I used to, and still do, pop out to a local café, just for a coffee and a chat. The gym was another occupation but because of other issues I can't do that now.

It may be worth contacting a local Volunteer Centre and see if they have anything on offer that grabs your interest. The beauty of voluntary work is that you can do as much or as little as you are able and can work it round other commitments.

I also travel abroad quite a lot, a couple of weeks at a time, visiting all those places that are on my bucket list and just returning to places because I love them.

I now wonder how I ever found the time to go to work

Julie, I can understand the intensive care situation but I was under the impression that you were only supposed to get 3 cancellations before you have to get the procedure done.

Fingers crossed that it happens on Wednesday for you. I can imagine how the worry and frustration is affecting you.

Ian, nothing to forgive, we are here to give support, so as Win says, keep typing here.

Ian, what you are feeling is quite normal after a SAH, not many of us have got away from feeling like that.

My suggestion is to visit your GP and ask for counselling  to help you come to terms with the event. There may be some drugs to help you along in the first instance.

Headway could be another port of call as is The Brain and Spine Foundation. Both are willing to listen and give advice on how to cope with those feelings.

There is help out there, go get it.

Check ups are usually after about 3 months as per usual after any surgical intervention. If you are concerned contact the neuro secretary and ask when yours is scheduled for.

Different areas may well have different criteria to meet.

Ian, the RTA head injury and the SAH are more than likely completely unrelated and just coincidence.

Good luck in your effort to lose weight and drinking lots of water can only be good, it helps keep headaches at bay as well as all the other advantages.

It sounds very interesting and I would love to go but sadly the distance is a bar.

Are you going Daff? If you are, could you give us feedback please?

Just another thought. As you are a carer for your husband ask a carer's assessment from Social Services. They may well have suggestions to make life a little easier for you or may well be able to put help in place.

Contact Adult Care at your County Council. There is no shame in asking for help even if it is for the short term.

Two steps forward and one back is normal in recovery from a SAH. It does get better over time. I know it must be very difficult for you to find that quiet time for yourself but you really do need it even if it means things slide at home a little. Better for that to happen and you continue making those baby steps forward.

I feel you are trying to do too much, have you anyone who could take some of the weight off your shoulders for a while?

I will add to Macca's post, the health care professional who assessed you will have awarded points, BUT, the decision maker at DWP has the last say, they can award more points or they can remove them too.

You need to ring the number on you decision letter and ask for a statement of reasons unless you got one for your mandatory reconsideration anyway. That way you can go through each point and see what you don't agree with to make a case for your tribunal appeal.

Jan, before you think of CAB try your Councils Welfare Rights department. I say this because CAB are often volunteers who do not have such intense training as the council employed Welfare Rights Officers.

To be honest all welfare rights places are overwhelmed because of all the changes and people appealing decisions. You may be lucky and get an appointment within your time limit for appeal. If you cant then get telephone advice.

Another option may be Headway, I think they have advisors too.

Whoever you contact will be able to tell you if you have a good chance of winning at tribunal as you need to meet the criteria for PIP

This may help, only just found it. 

http://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

Yes it is worth going to appeal, many decisions are overturned. Reconsiderations rarely change the original decision. If you do appeal to the tribunal you have to make sure that you meet the criteria for PIP and for a better chance of an award you have to attend, do not opt for a paper appeal.

Get help from a Welfare Rights Officer at your local council or county council or even CAB.

You could register for this site http://www.youreable.com/forums/forum.php, it is listed in our stickies.

On there you will find lots of information in the form of stickies and people who are quite well versed in PIP who will answer any questions you may have.

Brilliant news that will give confidence to any of our members who end up in the same boat.

Thank you for updating us.

Hi Rachel, just a thought, are you keeping well hydrated. Drinking lots of water does help the headaches in some cases. May be well worth a try.

Jan, you may need your medication adjusting in view of the fact that the seizures appear to be worsening.

I would advise that you go back to the doctors and discuss it with them. They may well be able to do something with your medication, types or dosages

Failing that, are you still under a consultant? If so try and get an appointment.

Paul, your meds are there for a reason. Do not stop taking them unless you get medical advice besides which it may not be safe just to stop taking them. You may have to be weaned off some of them.

Just answer honestly but don't make an effort to get dressed up for it, usual daily clothes. I hate to put a dampener on it but don't be surprised if the assessor twists what you answer. Happens often, so be prepared for it to be refused and have to go to a Mandatory Reconsideration and then onto Tribunal. 

This is happening to a great number of claiments.

If you are on the changeover from DLA to PIP please be aware that the criteria is very different.

Well done Subs, a tidy amount that will be put to good use.

Is it possible for you to make an appointment to see his medical team for when you can get there? Another alternative could be to have a telephone consultation with them.

I do hope that you can find some way of talking to his team to answer your questions and clarify things for you.

I had a replacement knee, although it was 10 years after my SAH and only had a spinal block. I seemed to recover pretty quickly and was back in the pool doing limited exercise after 3 weeks.

I had an hysterectomy many years before my SAH and found recovery did take a long time. It is a major operation and I suspect you are expecting too much too soon. Take some steps back and start again very gently and do not push yourself. Baby steps in the first instance.

Your depression could be a result of wanting to do and finding yourself unable to achieve what you want to achieve. It may well improve as time passes and your recovery continues. Failing that, see your doctor again and he may give you something short term to help you climb out of the pit you find yourself in. There is also the option of requesting counselling as well. 

I use post-it notes and notebooks for important things that need to be remembered as I can never remember anything that has happened recently. Once I have acted on what is written on the note I tick it off. I regularly ask or tell hubby something and again after a few minutes because I can't remember doing it in the 1st place and even ask a third time. It must be very frustrating for him and it does look as if I am nagging.

Lists upon lists in this house, it is the only way I can cope.

Blow what other people think, if that is how you manage, so be it.

Regarding benefits, other than CAB your local council or county council often have Welfare Rights Officers. You should be entitled to something.

Found these http://www.thetimenow.com/united_kingdom/paisley/social_services-1558/welfare_rights-69523

and these http://www.shiftbusiness.co.uk/profile/welfare-rights-paisley.html

Google Welfare Rights in your area, there seems to be some apart from those I have listed.

My first symptom, although only realised it was in hindsight, was a pain behind my left eye that came and went. I put it down to iritis  which I used to get occasionally.

Second was the feeling that my head had exploded with pain and hubby called an ambulance. I then started vomiting. From that point onwards I cannot remember anything. 

I have had a knee replacement a year or so ago. On saying that I was coiled and my knee surgery was done with a spinal block. Take advice from a neurosurgeon as Jess advises.

Claudette, please do not try to worry, we have members who have had coils added and all have been fine.

I know you are assuming but until they tell you what is what you are totally in the dark.

I think it was a bit naughty of the to mention anything to you until a decision was made on further treatment, then they could have given you the full picture not half of one causing this worry.

It is only natural to be frightened, anyone would be. As to a decision, only you can make that after discussion with the medics.