Building the day round MS fatigue

Fatigue is one of the most common symptoms of MS. The MS Trust's guide to MS fatigue puts it at between six and eight people in ten, depending on the research, and it is one of the most disabling, because it takes the hours out of a day rather than the strength out of one limb.

Before you build a week round it, ask the MS nurse or the GP what else might be adding to it. The NHS guideline for MS is clear that fatigue in someone with MS should not simply be put down to the MS. Broken sleep, anaemia, a thyroid problem, low mood, pain, a urine infection and some medicines all make it worse, and each has something that can be done about it. A bladder waking you in the night is one of the treatable ones, and bladder and bowel care with MS covers what a continence service can offer. MS care at home sets out who is involved.

Four habits sit behind the second day, and an occupational therapist will teach all of them. Plan the week before it starts and decide what matters in it, so the rest can move if a day goes badly. Put short rests in the diary ahead of the effort rather than waiting to collapse into one afterwards. Break a job into steps done at different times, so the bedding is stripped in the morning and made up after lunch. Then spend your best hours on whatever you would be sorriest to miss, rather than on the washing.

Nobody else can tell you which hours are yours. Keeping a rough note for a fortnight, with what you did and how the rest of the day went, shows the pattern faster than trying to remember it, and gives the MS nurse something to work from.

An occupational therapist does this properly, in your own kitchen and bathroom, and will suggest equipment you would not have thought of. Ask the MS nurse to refer you, or ask your council's adult social care team for a needs assessment, which anyone can request. The NHS guide to home adaptations explains that your council should pay for each adaptation costing under £1,000, which covers grab rails, a ramp or motion-sensor lighting. Home adaptations that reduce the need for care covers larger changes, and local authority funding explains how to ask.

Telling this apart from a relapse matters, and there is a rule of thumb for it. Symptoms brought on by heat settle within a few hours of cooling down, which is why a cold drink and a cool room are worth trying before you ring anyone. Symptoms that are new, or clearly worse, and stay that way beyond a day are a call to the MS nurse instead. The MS Trust's page on Uhthoff's phenomenon sets out both.

Infections deserve their own line, because they raise your temperature and can set off a relapse. A urine infection is the one to know about, since it can show itself as worse fatigue and more confusion before anything else, and UTIs and sudden confusion covers what to look for. If a relapse does start, MS relapse cover at short notice covers arranging extra help for a fortnight.

Most of this does not need a daily visit. Two hours twice a week, on the days the washing and the shopping fall, is four hours: £72 to £100 a week on PrimeCarers, against £112 to £140 through an agency. If mornings are the problem instead, an hour a day is seven hours a week, and where the hours in between have become the problem too, covering a whole day with progressive MS compares more visits, a carer at night and live-in care. When you are ready to put a figure on it, you can search for carers near you and compare their rates.

If what would help most is company and the household jobs rather than washing and dressing, companionship care covers what those visits include. If you are in your thirties or forties and the word care sits badly with you, disability care at home is written for working-age adults.

Carers on PrimeCarers are self-employed people you find, interview and book directly. We are an introductory service rather than an agency or a care provider, so we do not provide, deliver or manage care. Before a carer appears we check their identity and right to work, run an enhanced DBS check on the Update Service, and interview them online, and they hold insurance while they work. We do not check qualifications, training or references. What a carer says about their MS experience is their own account on their profile, for you to ask about at interview.

1. 1

   Tell your employer, if you are able to

   It starts the duty

   Schedule 1 of the Equality Act 2010 states that multiple sclerosis is a disability, so you do not have to prove how badly it affects you. Once an employer knows, they must make reasonable adjustments so that you are not substantially disadvantaged in your job, at their cost.
2. 2

   Ask for the adjustments that buy hours

   Be specific

   A later start, some days worked from home, a parking space nearer the door, somewhere quiet to lie down at lunchtime, longer breaks, and the meetings that need your full attention put in your best hours rather than at four in the afternoon.
3. 3

   Apply to Access to Work

   A government grant

   Access to Work is a Department for Work and Pensions scheme that helps people with a health condition or disability get or stay in work. It does not pay for the reasonable adjustments your employer has to make, it does not have to be paid back, and it does not affect other benefits.
4. 4

   Get the fatigue written down

   By somebody clinical

   A letter from the MS nurse or occupational therapist, or an occupational health report arranged through work, turns being tired into a described symptom with recommendations attached. That is what tends to change how a manager responds.

The government guidance on reasonable adjustments for disabled workers sets out what an employer has to do, and Access to Work explains how to apply.

Being disbelieved at home is harder, because there is no procedure for it. What tends to help is explaining the symptom once, calmly, to the people who need to understand it, rather than defending it every time. A relative doing the jobs you can no longer manage may be carrying more than either of you has said out loud, and balancing work with caring is written for them.