Movement Issues and Fatigue

[Gemma B-B]

I was wondering if anyone had any advice or personal experience to offer in this area….

 

As a quick recap – I had an NASAH at the end of January this year either during or immediately after heart surgery. I have no memory from this time as I went into a coma and was put in life support. I was transferred to another hospital to have an EVD fitted and then later on a VP shunt when my hydrocephalus did not right itself. I have no memory from this time and didn’t start to retain any memories until the very end of my hospital stay. I came out of hospital at the end of February into full-time care and began my road to recovery.

 

From subsequent appointments and discussions with my specialist I have found out that my SAH was a grade 4/5 due to the amount of bleeding and my presentation at the hospital. As a result of this I have been left with a few on-going issues – this includes cognitive issues (reduced speed of thought processing, executive dysfunction and attentional memory issues), fatigue and also some mobility issues (mainly balance, precise movement with my lower limbs and processing where objects are in relation to myself – I walk into things most days and walking in crowds is a disaster!). From what I understand these are all fairly standard post-SAH and are not unexpected given the severity of the bleed I had.

 

I am fortunate enough to live near to a specialist brain injury rehabilitation service. I was referred to this when I was discharged from hospital and assessed by them in May. I began my programme of rehab with them in June and am still going to it now. I see an occupational therapist and have also had sessions with a physiotherapist. My physiotherapist has assessed my movement and determined that I have issues with movement in my legs (upper body movement is fine). This makes walking long distances difficult and precise movements hard.

 

Generally speaking I have made quite a good recovery. With my rehab support I have started going back into work, not actually teaching but doing admin and other tasks in order to build up my stamina. The plan is to start a phased return in January where I will begin teaching again and building up my hours and duties. At the moment I am going into work two half-days a week and then doing rehab on one day. I usually try to do something else on one of my ‘days off’ as per my OT advice – such as getting a bus to see a friend. I am also doing more around the house in terms of cleaning/cooking etc.

 

The thing is that my physical movement and balance actually seems to be getting worse. I am limping most days now and my balance is often off. Friends/relatives have also noticed this as well. I am not quite sure what the reason is for this. It could be a physical manifestation of fatigue as I have noticed that it is worse the more fatigued I am (when I am very fatigued I even putting on my shoes is a struggle).

 

My OT has also suggested that as I make gains cognitively I may get worse physically as my brain simply doesn’t do everything it used to. It is also possible that it is connected to my hydrocephalus – potentially my shunt could need adjusting, though I would imagine the symptoms would be more severe if that was the case.

 

I have spoken to my specialist and have an appointment to see them in the coming weeks so am covered from the medical point of view. I am not looking for any medical advice but more wondering if anyone else had experienced anything similar in their recovery. I know every recovery is different but had anyone had their balance/movement etc. get worse or noticed it varying in connection to their fatigue?

 

Any advice or shared experiences would be appreciated!  

[Louise]

Hi there

 

I was actually in Rehab hospital but know exactly what your talking about...

 

Yes balance does vary due to stress or fatigue or just general tiredness, much as I understand the OT saying get the bus to visit a friend, it is your 'day off' perhaps your just doing way to much....

[Winb143]

Hi Gemma,

 

All I remember is cooking a curry and my sister rang about her son and I really didn't want to hear it as my headached  and was thumping.

This was in  Aug 2009 !! (approx.)

 

She went on and on and then my hubby came in with a bottle or 2 of vino, I got 2 glasses out and my sister was still telling me her woes, and then I passed out, that's all I remember until  Sept. 2010, I had a shunt in and it was like someone switching on a light.

 

I remember dream like things and I also remember playing up the OT's as they shouted at me. 

I had Ventriculitis, Sepsis and UTI,  also I was a grade 4 . 

 

So all in all I am lucky to be here and always tell my family how much I love them every day and I knew when I was getting better as I do not get fussed like I did ..lol.  I have trouble walking and in a wheelchair but I was told I'd never walk again but now easy 60 paces  but

harder 60/100 yards then back hurts me so much I have to sit down. 

 

Good Luck and it is early days for you,  but always look forward.  You will see how far you have come, and prove everybody wrong.

 

I have had hardly any rehab apart from putting a triangle shape into the wrong shape so I banged it in. lol and I cried everytime I went to the OT's and they said put her in a home.  Although out of it I knew I never liked them !! Is that me being awkward, more than likely.

 

I am lucky I have a good Hubby and Daughter and I often think how many people in homes who need someone to be kind to them. or give them attention.

Love

Win xx xx

[Super Mario]

I have balance issues 11 years on. I can't remember the early days at all but seem to think that I was okish at first then a week or so after discharge I kept falling over. It is much worse when I am tired or fatigued and I can't stay on my feet at all then.

I use a walking frame all of the time now and still manage to fall.

 

I also have a shunt and often wonder if the original hydrocephalus was the cause of my balance issues rather than the SAH but nobody can answer that. It is unknown when the damage causing the problem was caused.

[Gemma B-B]

Thank you all for sharing your experiences. As you have said Super Mario - it is difficult to know what is causing the issues - the bleed or the hydrocephalus!

 

Louise - you could be right about me simply doing too much. The reason behind all this is to try and build up my stamina to return to full time work prior to starting my phased return. I can't seem to get past doing about 3 or 4 days of activity a week. That seems to be my limit at the moment and no matter what pacing/strategies I put into place I can't seem to overcome it. Perhaps that is simply my limit and I will have to accept that. I know if I push myself too far I get worse balance wise and also have headaches etc. to contend with. I think I still find it hard to get my head around my limitations. They are not what you expect at 28!

 

Win - you are right it is still early days. I do always try to tell myself that and look back and see how far I have come. When I was in hospital I failed my first set of discharge tests as I couldn't dress myself or do anything and now I am at home and able to look to going back into work. I just need to have some patience!

 

xx

[Carolynusa]

Hi Gemma - I'm a year and a half out from my sah.  I didn't really have any physical symptoms afterwards except dizzy and a little wobbling.  So...I come home after 8 weeks in hospital and, the first thing I did, was fall on the floor and slam my head against my microwave cart.  Hard.  I was sure my shunt was going to explode but came out okay.

I'm very careful these days to try to take it slowly when I walk, always find something to grab if I get dizzy or wobbly; be extremely careful in shower, etc.  Do you remember or know about the toy "weeble wobble"?  They had very round behinds and wobbled all of the time.  While I don't exactly have a rounded behind (working on it though!) I still wobble like them.  Try to take it with a little humor if you can - while always paying attention to what you are doing.  Example:  If you are climbing stairs hold the railing tight.  

 

It is good that your are paying such attention to your symptoms and getting treatment.  This will make you feel a lot better and, through this site, you will see there are a lot of people with the symptoms you describe.  You're on the right path so be proud of yourself for any progress that you make.  Don't stew too much about it.  I, personally, get a very good feeling from your posts.  Carry on!  You sound like a very wise and wonderful person.

Love to you

Carolyn

[Daffodil]

Gemma. All the shunt girls are here. With Win leading I'm sure we would be a winning five piece!! As Carolyn, Mario , Win and louise say, take heart, you are doing well. Keep faith it will continue to improve.

Like you I had a grade 4 then the hydro came back yet again so in went the shunt. And balance was a tricky one for quite a while for me. I built very slowly and very gradually in anything, it's the only thing that has helped me stamina wise and if I did anything I had to rest afterwards . Now not so much resting but on bad days yes I still have to go easy. On bad days I still walk with a stick because I know my balance is off but hey I can walk when I couldn't so I will be proud and happy with my walking aid.

When I was not driving as I know you aren't I also got the bus and remember just falling off it one day, my legs just would not do what I wanted, and there were many times of just landing flat on my face. I do think the effect of the hydrocephalus and resulting damage is very different to the problems created by the bleed but that's just my personal speculation.

I did get my shunt adjusted quite a few times in the first year. I felt , I knew it was not right for me, I was getting too dizzy, felt like I was slowing down, i was going backwards but only you and your team can make that call. It's good you are being checked out. I know that team and trust them.

The one thing I would say is that you are achieving an awful lot after such a bleed and your ops and adjusting to a shunt. You are working two half days, doing OT, and your things and yes it may be that you brain is struggling at this point so ramp it down and then bring it back up again gradually. More breaks in the day of nothing, it's so frustrating I know but when I recall what I was doing twelve months out I can tell you there was an awful lot of one step forwards, two back at that point. It seemed every time I regained something, something else was skewiff.

[Winb143]

I agree with All the shunter's  Gemma,

 

Being Captain of the Shunters club !!  You are initially and cordially  invited to be a fully fledged member (light heartedness)

 

Don't worry too much (easier said than done) You will get there. xx

 

The first time I walked,  I had people looking at me, bent over and botty  sticking out, as Carolyn says like a weeble wobbles but they don't fall down. (unless called Daffs xx)  I looked at them looking at me and said "not too bad for someone who was told they'd never walk again".

 

I did look a sight but I have to keep on or else I'll never walk and I'm not giving up that easy. xx 

 

Gemma Never give up and when you feel shattered have a longer tea break  or loo breaks etc.  We can do it xxxx

Love

Win xxxx

[sue984]

I went home from rehab in a wheelchair, and through some very intense PT I relearned how to walk.  Now I'm okay usually in the house, (Just do a lot of leaning and holding on to counters, etc.) and I have a rollator to use outside on our property.  No more canes either; I hold on to my husband, and have learned that shopping carts are wonderful!  (The 1st time I used a shopping cart I was delighted at the independence it gave me!)  So now I grab my cart and go!
 
Everything is worse when I'm tired.  I have learned to get my stuff done in the house, i.e., laundry, early on when I'm feeling better.  I tell people now that when my energy's gone - it's gone, and don't apologize for it. My speech is worse, my balance is so much worse I've ended up falling and hurting myself.  (Not pleasant, but a learning experience nonetheless.)
 
Be kind to yourselves!
Susan

[Winb143]

I started walking thanks to Sainsburys  wheelchair trolleys, they were higher at the back which meant my back was straight and I walked with it for the first time approx. 4 1/2 years ago.  Me, walking, I was so proud of myself and a little out of breath to say the least. 

 

A few steps for a regular shopper but for me it was my road back to independence.  xx

 

Going to the loo on my own is brilliant lol.  Be of good heart Gemma and never say never xx

 

Win wishing you Well xxxxx Keep going  xxxxx

[Gemma B-B]

Some lovely advice and sentiments everyone – thank you so much for taking the time to share. It is so nice to be able to come onto here and post about an issue and hear back from other people who have also had some experience of it. It is really encouraging to hear about the progress you have all made in your recoveries - so thank you xx

 

Carolyn – your point about the ‘weeble, wobble’ made me smile. I do remember the toys and think I am quite like that now! I always do take care in the shower and when I am out and about as I know my balance is so much worse. I do have a stick for when I am feeling particularly bad, which I mainly use if I am going out to town as I find that a bit of a trial. Luckily for me I already live in a bungalow so don’t have stairs to contend with on a daily basis!

 

Daffodil – I definitely know what you mean about legs not doing what you want them to – that seems to happen to me quite a bit and even with the physio I do not feel like I have made much improvement. Thus far on the bus the worst thing that has happened is someone getting mad at me for sitting in the seats for those less able to stand, which I was doing as I try not to move about the bus when it is moving. I (politely) explained to them about the brain haemorrhage and resulting physical issues - I think they felt quite bad afterwards! That is one of the main issues - the better you look the more people don't realise the daily struggle.

 

It will definitely be useful to see the team down in London and see what they think about the shunt. I agree with your opinion on the effects of the hydrocephalus and the bleed being quite different, but again do not have any real evidence for this. I also think you might be right about taking it a bit slower. I have cancelled some of my plans for my days off this week and am taking it easy. I have also started to take a few more breaks whilst in work, which is helping (my OT says I have to call them ‘total cognitive breaks’ so my colleagues know that they are for that and not just because I am feeling ‘tired’). I think I just get impatient with how long recovery takes, but I know I need to be realistic about what I can achieve.

 

Win – thank you for the formal invite to join the prestigious Shunters Club – I gratefully accept!

 

Sue – yes everything does get worse when I am tired too – speech, balance etc. just goes. I think my brain simply can’t do everything it once did. It is nice to hear about your experience and how far you have come. You are definitely right about not apologising for when your energy is gone – when it is gone, it is gone!

 

Thank you once again everyone xxxxxx

[Macca]

Hi Gemma,

 

I have fatigue issues.  This is my experience. When I was coiled, my pituitary gland was damaged.  On checking its function through the 'diabetes and endocrine' clinic at the hospital, I was found to be short of growth hormone because the pituitary gland had stopped producing it.

 

I'm not saying this has happened in your case but if it can happen to me it can happen to anyone.  I now take daily injections of growth hormone for life. You might want to ask your doctors to check whether yours works and see if you are deficient in anything.  It has worked wonders for me. Don't get your hopes up I am only saying it is a possibility, I am not medically qualified and it might not apply in your case, or anyone else's for that matter.

 

I suffered balance problems and talked 'broken biscuits' when I was tired.  I am much, much better now.  My balance returned but I am not sure if that's down to the hormone replacement or just the passage of time.  I am now 5 years out from my SAH.

 

Good luck whatever you decide to do.

 

Macca

[Gemma B-B]

Hi Macca,

 

An interesting point - thank you for sharing. I will definitely mention it at my next appointment as it could be a possibility and I think it is always worth getting these things checked out.

 

It is encouraging to hear how you have improved over the past 5 years. Even in the 10 months since my SAH I have noticed improvements with the fatigue. For example I used to stammer and slur my speech a lot more when fatigued whereas that isn't that bad now. It is always good to hear of the progress people have made. It just goes to show there is always hope and possible improvements.

 

Gemma xx

[SarahLou]

Hi Gemma,

My SAH was in August 2010, I needed clipping surgery and I had hydrocephalus although was lucky enough not to require a shunt.

From about six months after SAH I was advised to be going out for little walks twice a day and I can clearly remember walking down the road and stopping, wondering why an earth I couldn't walk in a straight line! My balance seemed to be getting worse the more I was doing.

I still struggle with my balance now. I was referred back to Neuro because of this, had another MRI the beginning of this year and was told 'no significant change since previous MRI ' ... So I was basically told it's a part of me now and something I have to learn to live with and accept.

Yes, it's much much worse when I've been doing too much, I walk like I'm drunk and muddle my words! But it does get easier to cope with. I've learnt to adapt and notice the signs, but hey I still push myself too hard sometimes!

I returned to work 14 months after my SAH and it totally floored me but I wanted to get back to work, have that piece of 'normal' back. I even managed a complete career change and studies!

You are in early days of recovery, you've done amazing, be proud of yourself, but also have patience and understanding.

I've learnt the hard way that I must try and 'rest' on my rest days off work, even if it is an hour of 'me' time.

When I do too much and don't listen to my brain it gives me a kick to remind me it has been injured!

Be wise with your 'spoons'... Look up 'The Spoon Theory' that will explain things!

I wish you well with your continued recovery.

Take care,

SarahLou Xx

[Gemma B-B]

Hi Sarah Lou,

 

Thanks for sharing your experience. It is useful to hear about other peoples experiences of balance issues post-SAH.

 

I do think my current balance issues are to do with fatigue as it does vary based on the amount and type of activity I am doing. I think it will be a matter of learning my warning signs and pacing my activities well, however I imagine that it will be a somewhat permanent fixture in my life - at least for the next few years. 

 

I have seen 'the spoon theory' and it does explain well what it is like to have something like neurological fatigue. I did a similar exercise in rehab where I kept a fatigue diary and had to grade myself on how fatigued I was at different points in the day. It was a useful exercise for identify the types of activity I actually find the most draining and the points of the day I find the most difficult.

 

The hardest thing I find is that I never actually seem to get back to a full battery (or a full set of spoons). I think I make the mistake of resting for a while, feeling better and therefore doing something else which means that I then deplete any energy I have built up. I am trying to get better at taking full breaks away from anything to give me that time to rest up. Work have also been supportive in this and have set aside a space where I can go and sit away from any colleagues or pupils in order to rest up as well. I am also trying to make sure I use my rest days at home well.

 

It is encouraging to hear about your return to work and also that you managed to change career post-SAH. Well done   

 

Take care of yourself,

Gemma x

[Louise]

I would honestly say that I was still recovering 3years plus why I always don't think this is 'it'

 

I don't think any of us have a full battery now, our batteries are damaged & a challenge to adapt to that like a child we learn by our mistakes and find out what works and what doesn't.

[momo]

Hi Gemma I think you are doing really well for this stage in your recovery and I think that is promising.

 

 I also had a grade 4 bleed but I remember very little of my first year of recovery but I do remember having to hold on to someone whilst walking balance was pretty bad.  I would say that the first 3 years are all a bit hazy I remember some things but very limited.  Recovery for me has been slow.

I think a fatigue diary is a brilliant idea because its not just about doing too much its definitely the type of task you are doing.  I can find a long car journey very draining (and that's with me not driving)..this is because I'm not content to just switch off I watch everything on the road almost like the backseat driver!!  Long conversations especially with people I don't know very well also tire me out.  These are just a couple of the many many things that will make me fatigued even now and I'm 7 years post SAH..

My balance issues are not as bad now but I do wobble a bit when tired.  I can't stand in queues for very long my legs start to go!  I know my limits now I make adjustments.

 

For me I do feel that recovery is continuing. I'm a lot better this year than last year for example.  I've had to learn to adjust, adapt but most of all rest when required.  That way I can make it through the day.

Good luck Gemma remember its still early days for you, be kind to yourself.  

  

[Gemma B-B]

Yes the fatigue diary was very useful in identifying the things that I find most draining. It was actually quite surprising as some things were quite unexpectedly fatiguing. I also had to note how I felt emotionally about each task to see whether or not it was worth getting more fatigued for. It was a useful exercise in helping me pace my activities and decide on what I wanted to spend my time on.

 

From doing it my OT thought that the worst things for me were those that involved both visual stimulation and noise as well, which I guess it why I didn't like the TV or going into town. Like you Momo I also find car journeys much worse than I used to so we make sure we stop so I can have some breaks. Learning to manage it all is still an ongoing process though and I think will continue to be so for a long time to come.

 

It is good to hear of recovery continuing for years to come, so thank you both for sharing that.

 

Take care xx

[kpaggett]

Hi all,

So I found in my own recovery that it is not a steady upward slope.  It has progression and retreat.  My brain decides on its own with no input from me what gets the improvement and it isn't always in the areas where I want to see improvement.  

 

Stress is a big issue and it isn't what I think stress looks like, it is what my brain decides is stressful.  This always throws me off and sets me back when I don't identify what is happening and try to resit.  Resting isn't always the answer, but it really was at first...for the first couple of years, I'd say.  

 

Now, it is often different, but none-the-less, it is what my body/brain need instead of what I want to do or not do.

 

When one of us talks about listening to your body, it takes on a whole new meaning after something like SAH occurs and sometimes we have been cultured to NOT listen to ourselves and put others first instead and that is the virtue.  

 

In our case learning a new virtue of self-care is really important and actually, the people around us are dealing with stuff too and could use a lesson in this as well...so we are actually lucky that we get this lesson.

 

Take care,

~Kris