Just....... struggling

[Eastendgirl]

So a 2nd opinion has confirmed dx of RRMS some 18 months after the original dx.  I'm still having trouble accepting it but admit I finally have to.  Events and stress have exacerbated symptoms over the past few months and whilst I'm still not 100% convinced, it does seem more than coincidental that I should be feeling so unwell at possibly the worst time in my life.

 

I feel as though I've ground to a halt both physically and mentally right now. Have said goodbye to a job I recently started  because I just can't make it into the office. Living on painkillers and alcohol, not a good combo I know, but helps me at the moment and to hell with the consequences.

I keep reading about the importance of looking after one's mental health and how it can affect / be affected by MS, but there seems very little support from an MS team point of view, ie there is no MH professional as part of the team. Has anyone else found this?  It's all very well focussing on the physical aspects of MS and treatments, but not much good if the psychological side is ignored and ends up killing you first.

 

Probably should give the MS nurse a call but I don't want to be told it's another pseudo-relapse and made to feel as though I'm wasting her time. There's nothing they can do about it anyway. I feel very alone with this.

[Stumbler]

@Eastendgirl , never feel alone. We understand how you feel because we've all been there. The feeling of hopelessness and futility, but we're all still here, having regained our perspective of life.

 

One way of relating to our MS is to look on it as the uninvited lodger that it is. Yes, they're unwelcome, but eviction is not an option. So, you need to find a way where you can both live together, without causing each other any grief. And that means keeping stress out of your life, or keeping it well managed. Stress produces chemicals in the brain which are detrimental to our Central Nervous System ( CNS), which is the area already under  attack from our MS. So you can see the connection.

 

You're right about your mental health. Whilst your perspective is out of kilter, your MS can seem HUGE. So, you do need to find a way of looking at things in a more positive manner. First off, go and see your GP and have an honest chat with them about how you're feeling. Antidepressants aren't a sign of weakness. They're a way of helping you think in the right way. Antidepressants are part of my daily ritual.

 

Then contact your MS Nurse and ask whether you can be referred to a Neuro-psychologist, to help you untangle your thoughts.

 

Finally, painkillers and alcohol aren't a good combination. What painkillers, for what specific problem and do they work?

 

[Nick]

You are not alone here.  Support on the mental wellbeing with MS is, I would say, inadequate. But do contact your MS Nurse again, whatever happens that can only be a positive step.  Unfortunately alcohol does seem to affect my own MS and it's good if you can reduce it.  Painkillers do work, but again it is a delicate balance. Like you, stress has played a big part in my own MS and it is a very difficult thing to control, particular in your current circumstance.  This for me is the main thing to tackle. Posting on here is one of the things that may help. Explaining to others who know where you are coming from is very useful. It might also be worth thinking about contacting a local MS group. That is a difficult step but you may be surprised at the support it brings.

 

Nick

[Eastendgirl]

Thanks for your responses guys...

 

Having been told "we do not have a dedicated mental health professional for MS", I not sure that asking to be referred to a Neuro-psychologist would be met with anything other than derisive laughter, especially living in an area where the local Health Authority is in special measures. But it might be worth a go, although there is only 1 MS Nurse covering the whole of the area and previous meetings with her been less than helpful (is the politest way I can put it!)

 

I know what you are saying about keeping stress to a minimum or at a manageable level (in normal circumstances the antidepressants would probably be taking care of that - I've been on Fluoxetine for some time - they are the least evil in terms of unwanted side effects of all the various antidepressants I've tried over the years). But these are not normal circumstances; apart from the job situation, my Mum has just died. This has been something of a double-whammy and seems to have sent my stress levels into overload, hence the exacerbation of symptoms I guess.

Have contacted local MS group but not had any response back yet.

To answer your quetion, painkillers - Gabapentin for neuropathic pain.

 

Thanks for listening.

 

 

[Stumbler]

@Eastendgirl , you should read through the NICE guidance for the management of MS, especially the section on Coordination of care, about 2/3 of the way down this webpage :-

 

Key priorities for implementation | Multiple sclerosis in adults: management | Guidance | NICE

WWW.NICE.ORG.UK

 

[Nick]

I think we have all found it difficult at times to access the right health provision through the NHS (Of which I am a great fan)  The problems I have encountered are usually down to a lack of communication and the bureaucracy that sits above the people actually doing the job. 

This makes it extremely difficult to navigate through the system.  

People just don't understand the MS stress problem and just how much energy you need to spend (which you don't always have) on both understanding what is available and actually getting the help needed. 

I've just changed health authorities and feel like I am banging my head on a brick wall! so do understand your frustration.

The main thing is to try!! Small victories help boost your confidence and above all the thing is to keep on and not give up. 

 

Nick