Janet's Story

2006 was meant to be a year of new beginnings my darling husband Morris had been given a new lease of life in May of 2005 when he had his quadruple heart bypass. He had been really poorly from the September of 2004 and it was a stressful time for us as a family. For his mother it proved too much and she suffered with a heart attack the day before Morris was discharged from hospital and ended up having a triple bypass herself within days of her son. It was also the year we would celebrate our 25th Wedding Anniversary. I was running on low batteries and felt constantly tired from about the May. We had booked to go to Majorca for two weeks at the end of August as we would be celebrating our 25th Wedding Anniversary. A couple of days before we were due to leave I noticed that my left eye was badly bloodshot but thought nothing of it as it wasn’t painful just not particularly nice to look at. It cleared up and we had a really lovely and relaxing holiday.

I had only been back at work for less than two weeks when I had to take a further two weeks off when Claire was ill. I returned to work at the end of September and life began to return to a normal routine. In retrospect and to be honest I really can’t remember but Morris tells me I was suffering from more headaches but as I was taking quite a lot of Nurofen for tendonitis in my right ankle I just don’t know. It was about the beginning of October when I started getting very sharp pains behind my left eye. I put it down to stress at first after all that had happened with Claire and the fact that I was proof reading training documents at work. I also had quite a severe chest infection and had been sent for x-rays, the first lot of antibiotics failed to clear it and during this time the pain behind my eye was becoming more severe and even more intense, at times that it would wake me up.

I had decided to discuss it with my G.P when going back for more antibiotics but because I’m a stubborn person and she wouldn’t let me get a word in edgeways, too busy lecturing me on smoking I ended up leaving in a foul mood without mentioning it at all. It was now the beginning of November and the stabbing pain was happening more often. I had phoned the surgery for an appointment with a different G.P but could only get an appointment with the same G.P for the 3rd of November the Friday. On the Thursday was on a late shift 12 - 8 at work so went in as normal by about 2 p.m the pain behind my eye was quite severe whereas until that day it had come and gone and was mainly a stabbing pain now it had changed. Its quite hard to describe the stabbing sensation was still there but also constant throbbing and pressure. I took some painkillers hoping to ease it off and continued working. I went into a meeting at 3 p.m and it was during the meeting that I felt extremely ill and had to run off to the toilets. I felt really sick but wasn’t actually sick. I splashed my face with cool water and returned to the room and told them I had to go.

I must have looked bad as no-one argued with me I cleared my stuff away and called Morris to pick me up, he was painting his mum’s house so said he would send Claire. I didn’t make it out of the building had to dive into the toilets and was violently ill managed to rinse my mouth and face which helped slightly and made it outside to wait for Claire. Don’t you just love sympathetic children she took one look at me and said don’t you dare be sick in my car mum. Claire dropped me at home were I literally crawled up the stairs and put myself to bed with a bowl in tow. Morris came dashing home from his mum’s really concerned it was unheard of for me to go to bed no matter how ill I was but I just couldn’t move, any movement at all and the pain behind my eye got worse and the nausea.

I suppose if I had to get ill I had chosen the right time in one respect. Morris had just bought a black cab and was just that week starting up as a self-employed cab driver. Prior to this he was a rapid response driver for a security company working up to 50 hours a week and would have been unable to take time off to look after me. I made Morris go out to work and refused to go to the Doctors as I had an appointment the next afternoon. I just stayed in bed drifting in and out of sleep cringing and moaning every time a firework went off. Morris kept popping in to keep an eye on me and that night I did manage to sleep fitfully. On the Friday couldn’t really move a lot without pain but dragged myself out of bed in the afternoon to go to the Doctors. The Doctor was as useless as usual and not really very interested in listening to the type of pain I was having, merely pressed on my cheekbone asked if it was sore and said it was Sinusitis. I was sent home with Sinutab and told to go back the following week if it was no better.

The next morning actually dragged myself downstairs as Morris had been working and when he got into bed every time he moved my head hurt. I phoned work to let them know I would not be in as it was my Saturday to work and tried to lie on the sofa as could not manage to sit up right. Callum had Cbeebies on and the colours were playing havoc with my eyes now realise that I had photosensitivity so put up with it for as long as I could then crawled back into bed. I don’t know what was worse being downstairs with the telly or trying to keep my head still with Morris in bed eventually had to wake him up and ask him not very nicely to get out as he was making me feel ill. My poor husband and children were really worried about me and kept popping up to see how I was. Morris came in about 1 a.m the Sunday morning to check on me and wanted to take me to hospital as my left eyelid was partly closed and my vision had become blurred and double.

Morris wanted to take me straight to the hospital but I said I would phone the NHS helpline. One of the Nurses called me back and I described my symptoms and was told to get myself to hospital immediately, they did offer to send an ambulance for me but I said I didn’t need one and Morris took me. We got to the hospital early hours of the Sunday morning thankfully A.E was not too busy and I was seen fairly quickly. The Doctor actually knew there was something badly wrong with my sight but it went downhill from there as the A.E consultant would not approve a scan as they thought it might be caused by Glaucoma.

So I had to wait hours for the on call Ophthalmic Registrar to come out and they had no cubicle with a bed for me to lie down on. I was eventually seen by the Ophthalmic Registrar at 8 a.m and she diagnosed a Third Nerve Palsy and stated there was no damage to the eye at all that it was caused by pressure behind the eye. Back to A.E who now had to authorise a scan but as it was a Sunday had a further wait as they only have on call Radiologists at the weekend. It was 10 a.m before I finally had the scan completed and was sent back to A.E to wait for the results.

Finally at 11 o’clock they made the decision to admit me. Then began my bed hopping around Arrowe Park, I started off on a Trolley Observation ward until I was eventually transferred to a general observation award about 2 o’clock. Which is when I sent Morris home for some sleep poor man had been up all night and had not had much sleep the day before either because I had ejected him ruthlessly from the bed. I was kept in Arrowe Park hospital for six days during which time I was moved at least three times. I also had an MRI and a neck scan done I was supposed to see the visiting Neurologist on the Tuesday but due to an emergency it was the Thursday before he came. Although I remember all of my time in the hospital I was still suffering with excruciating pressure in my head and the stabbing pain behind my eye. I now know that my Aneurysm was leaking during this period and that sometimes I felt able to move about and leave the ward and at others could not lift my head from the pillows.

During all this time I was really hoping that it would just go away Morris and I were supposed to be going away for a long weekend to Santander on the Friday it was somewhere Morris had always wanted to go so I had arranged it as a surprise for him. Morris came in early on the Thursday to be there when the Neuro came. We saw him come in with the scans and he was just holding them up to the light not placing them on the boards to look at them. After about 10 minutes he came across to talk to us and said he could not see anything obvious but would take them all back to Walton with him for the team to look at. At which point I asked if I would be alright to fly to Spain the next day he said no I had to wait for them to examine the scans first then he would let the hospital know the following day. I woke up the Friday and was really bad, the pain had intensified even more and could not bear the lights, noise of the ward and was extremely sick yet again. I buried my head under pillows and covers and didn’t surface again until lunch time but still could not face hospital food. I finally managed to pull myself together and told the nursing staff where I was going down to the Cafe in case Walton got in touch. I called Morris and told him I was off the ward and he and his mother came up early. I was trying to eat something can’t remember what so I must have stayed off the ward for nearly two hours before we went back up.

When we got onto the ward the Nurses told me they had been looking for me, Walton had called telling them to get me on flat bed rest immediately as I had an Aneurysm that might go at anytime and they were arranging an immediate transfer for me. No doctor came to see before transfer to explain what it was or what the effects might be and I had never heard of them but did realise that if it was in my brain it was serious. Morris went off to take his mum home and let the girls know what was happening and told me he would then meet me at Walton.

I only had to wait about an hour for the transfer and what was then to be the longest few hours of my life. To say I was terrified is an understatement for the whole time I had been in hospital I had been going up and down in the lifts a few times a day and going outside on my own for a sly smoke. My thoughts turned to my family and I was really scared that I might not see my daughters and grandsons again and I certainly did not want to leave Morris, we had promised each others years ago that we would grow old, grey and wrinkly together. The trip over to Liverpool was awful it was through a Friday night rush hour and my poor head hated every single pothole and bump along the way. I got taken straight up to a Neurology ward and whether it was the journey or not I don’t know but the pain behind my eye became really excruciating and I had to wear an eye mask to block the light as it hurt so much.

The on call Surgeon came to see us about 11 p.m and explained a little about the condition and said if you get a really bad pain like someone kicking your head hard we’ll whip you into theatre tonight if not a Consultant will see you in the morning. Morris was sent home and told he could come back first thing and I spent the rest of the night in horrendous pain made worse by the fact that nearly all the women on the ward had eaten something for tea that disagreed with them. I spent the night groaning in pain and no amount of pain relief touched it. I made it till 8 o’clock the next morning then it ruptured again the pain was so bad that I was screaming with agony how long it lasted I don’t know probably seconds but it felt like forever. The nurses came running and tried to give me a cold compress but I demanded a hot one and when applied it eased it a bit.

Morris turned up just after and I think I just clung to him in absolute terror that I might not see him again. The Consultant came around just after Morris and went through the options with us. He explained that coiling was the preferred and less intrusive method but that it could not be done till the Monday as they don’t have the staff in at the weekends. He then went on to say that he considered that I should have an immediate Craniotomy as he did not think I would survive till the Monday for the coiling procedure. So really no choice at all but I was in so much pain I just didn’t care anyway and told him to go ahead. He did try to explain the risks in both procedures and the percentages but I don’t remember much of that conversation. I think I realised just how serious the procedure was because they let Morris accompany right down to theatre and he stayed with me until I was sedated.

I don’t know how long I was in theatre and even Morris is unsure as no-one came out to see him after the operation. The first he knew that I was alright was when he seen me being transferred to the H.D.U. My first memory is when Morris and my daughter Sarah came in to see me but as to the time really don’t know. I do know that later the Xfactor was on as the Nurses asked if I minded them putting the T.V on. I must have drifted in and out as remember the dreaded questions every couple of hours and always gave them the wrong hospital. On the Sunday because I obviously was doing really well they transferred me from H.D.U to a Neurological ward. I remained on the critical care part of the ward until the Tuesday when they got me out of bed and started me walking. Then moved further down the ward as I no longer needed constant observation. I remained in hospital till the Friday and then was discharged with no information at all just a letter for my G.P with my medication listed on it and an appointment for the Nurse to call the following Tuesday to remove my clips.

I can honestly say the first month or so doing anything at all just made me so exhausted and it was a real effort just to bathe and dress myself. I would cry buckets for no reason and even the simplest of tasks was beyond me. If I managed to get to the kitchen to make a drink chances were I would forget I’d made it and return several times and each time forget to take it back with me. I also suffered with my grammar and speech for quite some time much to the amusement of my family and friends. I always knew exactly what I wanted to say but what actually came out could be very different indeed and in some instances very embarrassing. I also had a very short concentration span and could lose the thread of conversations altogether especially if more than two people were involved. This still happens even now if I’m tired or in a busy place. My balance was all over the place because of the Third Nerve Palsy and it was really difficult to open my mouth to eat and chew food. In the second month I did start to feel slightly more able to do things but trying to load the washing machine was a definite no as bending made me really nauseous. I would start to cook but trying to keep upright for too long played havoc with my head so needed someone nearby to take over.

By Christmas although still suffering badly with the fatigue and head-pain I managed with Morris’ help to cook the lunch. It was while sitting in the dining room after lunch into the evening with just low lights and candles burning that Morris noticed that my lid was opening on my left eye. It was the best present ever even though it caused quite a few problems as the vision was still distorted and double. Over the next two months with patching the vision started improving at the end of February I had my follow up appointment with the Neurosurgeon who promptly discharged me but gave me a leaflet that I really should have been given when I first left the hospital.

I returned to work on a phased return in June 2007 and slowly increased this to 30 hours by the December. I did have ongoing problems with head pain and had started to try different types of medication to help control it.

In my second year it very slowly dawned on me that I was working 6 hours a day Monday to Friday and was too tired to do much of anything either in the evenings or at weekends. Being stubborn I struggled on till July of this year. After a really enjoyable meet in Cheshire I returned to work on the Monday by the Wednesday fatigue had kicked in and had to call in work sick both the Thursday and Friday. That’s when I made the major decision that I had to reduce my hours back down and work were really good letting me do so from right away. At the moment I’m working 25 hours a week but will most likely be reducing this further still the beginning of next year. Physically I am still suffering with a lot of head-pain in March of this year I returned to my G.P and discussed how I was getting on. The Doctor was unhappy that the pain I was getting was still almost continuous and sent a referral over to Walton for me to be seen by the Neuro he also had another C.T scan done to check everything was still ok. The scan result was alright which was a relief and I eventually got my appointment with Walton who had not received a copy of the scan so had to return 8 weeks later once they had a chance to review it. I had started taking a low dose of an anti-depressant in the October of 2007 for nerve pain but whilst stopping some of the pain it was not getting rid of it all.

On my second visit to Walton the Neuro talked about what type of treatment we could use and gave me an anti-epilepsy drug in a low dose to try and explained that they are not certain why some people suffer with nerve pain and others not at all and some can develop it years afterwards. The tablet I’m on at the moment isn’t working either my Doctor wanted to increase the dose but have asked to come off them as they are making me gain weight. I will be going back onto the low dose anti-depressant tablets as I already know they do cut down the pains a bit without making me turn into the Michelin Man. Recovering from an SAH is not easy or straight forward, it is a continuous journey of rediscovery that has to begin with acceptance which is perhaps the hardest thing to come to terms with. Once I learnt to accept and adapt to the new me it did get easier. I still get frustrated and angry about some of the things I used to take for granted. There are also quite a few things I would love to do like returning to studying but I now realise that at the moment my brain is not yet ready for that.

I would like to say a big thank you to Karen and her family also Keith (Bogbrush) for creating and maintaining this site and all those who contribute because it has played such an enormous part in my recovery.